Preparing Comments for: The Systematic Review Report for Diagnosis and Treatment of ME/CFS5/22/2021  On May 16, 2021 the CDC posted a call for comments on the report titled “Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): An Updated Systematic Evidence Review” in the Federal Register. Comments must be submitted before 16 August 2021. In this blog we will share some of the important aspects found in this 419 page report. Link to the Federal register announcement found HERE: Link to the website to download the 419 page report found HERE: Who Did The Report? Company: Pacific Northwest Evidence-based Practice Center Investigators: Roger Chou, MD, FACP Marian McDonagh, Pharm.D. Jessica C. Griffin, MS Sara Grusing, BA NOTE: This is the same organization that did the 2014 Pathways to Prevention (P2P) report. A 2014 blog by Jeannette Burmeister highlights the issues raised on those doing the work on the 2014 report having no experience with ME/CFS. “In response to a question from an IOM committee member, Susan Maier described the workshop as based on the “jury model” that requires the exclusion of any clinician or researcher who has any experience with ME/CFS." Introduction “This report was commissioned by the Centers for Disease Control and Prevention (CDC) to inform the development of a guideline on evaluation and management of myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS). It builds upon and updates a 2014 Agency for Healthcare Research and Quality (AHRQ) review that was conducted to support a National Institutes of Health Pathways to Prevention conference.” Conclusi0n “Evidence on effective treatments for ME/CFS remains limited. Although graded exercise and CBT were more effective than inactive control therapies (usual care, usual specialist care, or an attention control) in improving fatigue, function, and other outcomes, the magnitude of effects was small to moderate and methodological and other limitations (imprecision, inconsistency, uncertain generalizability) precluded strong conclusions. Other therapies were not shown to be effective or require additional evidence to verify effectiveness. Non-ME/CFS conditions were common in patients presenting with fatigue.” Who Does This Report Apply To? From page 1: “ME/CFS is a condition characterized by a constellation of symptoms; hallmarks of ME/CFS are post-exertional malaise and/or persistent and disabling fatigue, as well as various additional manifestations, including pain, sleep disturbance, orthostatic intolerance, motor impairment, neurological and cognitive manifestations (i.e., impaired concentration, mental processing, and memory), and altered immune and autonomic responses.” NOTE: This description uses the Fukuda definition that does not require post-exertional malaise (PEM). This is not in compliance with the expert information in more recent criteria that has made clear PEM is a requirement for diagnosis. The International Consensus Criteria clarified that the required symptom for diagnosis of ME is post exertional neuroimmune exhaustion (PENE). The following statement from the report seems to recognize that this report using the Fukuda definition for chronic fatigue syndrome may not apply to those with myalgic encephalomyelitis. “Although the terms ME and CFS are often used together or interchangeably, ME may be considered a subset of CFS or its own distinct disease.” Concerning Statement From Page 12 - “Key Question 1. In patients undergoing evaluation for possible ME/CFS, what is the frequency of non-ME/CFS conditions?” “A systematic review of studies of patients presenting with tiredness/fatigue found a pooled prevalence of anemia of 2.8% (95% CI 1.6% to 4.8%; 3 studies, N=1091), malignancy 0.6% (0.3% to 1.3%; 3 studies, N=1091), depression 18.5% (16.2% to 21.0%; 6 studies, N=1000), and serious somatic diseases 4.3% (2.7% to 6.7%; 3 studies, N=436).” Information in that statement raises the question of how the reviewers view the disease ME/CFS. “Serious somatic diseases 4.3%”. Somatic is defined as relating to the body, especially as distinct from the mind. This seems to indicate the reviewers do not think ME/CFS is a somatic disease or that it isn’t a “serious” somatic disease. Background on the Report Pacific Northwest Evidence-based Practice Center was hired to do a follow up report from the AHRQ Pathways to Prevention (P2P) report done in 2014. This 2014 report was reviewed by MEadvocacy.org in their blog entitled: “Sold Down the River in a Canoe with no Paddles.” “This is a carefully crafted political document. If your alarm bells didn’t ring at the five mentions of “self-management” in the Draft Executive Summary, then the myriad ways the authors stated the psychological: major depressive disorder, biopsychosocial parameters, multimodal therapy, mind-body connection, anxiety, and fear surely should have gotten your attention.” This statement from that blog applies to this new report as well. “We deserve better than this P2P report. Myalgic Encephalomyelitis (ME) deserves to be recognized as its own distinct disease (separate from chronic fatigue syndrome (CFS)), with a true ME definition that includes post exertional relapse as the hallmark symptom.” See the P2P and IOM - Born Under A Bad Sign blog from MEadvocacy.org for more background on the 2014 report. Comments & Responses from 2014 See the Disposition of Comments for Diagnosis and Treatment for ME/CFS from 2015 which gives the comments and responses from that P2P report. Comments covered a wide variety of issues that need to be reviewed within the current report. It is interesting to note that the responses from the 2015 comments addressing errors regarding the ICC include: “We have reviewed the ICC again and have edited the report to reflect their preference of the term ME. We have continued to use the label ME/C[F]S throughout the report in accordance with the P2P workshop.” Also “We have reviewed the consensus panel statement and have edited the report text accordingly: "The most recent international consensus report advocates moving away from the term CFS in favor of the term ME to better reflect an underlying pathophysiology involving widespread inflammation and neuropathology, and to embrace the two terms as synonymous. This panel of experts suggests that ME is a distinct illness inaccurately represented by the broader criteria of CFS.” And: “They recommend that patients meeting the International consensus criteria be given the name ME, and that those only meeting the criteria for CFS remain classified as CFS."” Going Forward At 419 pages there is a lot of information to review. Initial impressions raise serious doubts about the usefulness of this report for patients with myalgic encephalomyelitis. ME International will be submitting comments. We welcome your input. We can be reached at admin@ME-International.org, our page on Facebook or in our Facebook group.
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 UPDATED: 27 April 2021 Thanks to Becca for allowing us to share her heart wrenching but true words regarding the history of Myalgic Encephalomyelitis (ME) to a wider audience. We recognize that understanding how we got here is important in order to identify how best to move forward. We at ME International will continue to advocate for the recognition of ME as described in the ME International Consensus Criteria (ICC) - we feel the information provided in the ME ICPrimer provides guidance that can benefit everyone thrown into this melting pot no matter what label they have been given. The key to proper care is proper testing which leads to accurate diagnosis and that applies to everyone, no matter what disease lands someone in this melting pot. ~ ME International *****************************************
How to hide a disease in plain sight: First, equate it with hysteria. Cast suspicion on sufferers as neurotics and hypochondriacs. Then conflate it with fatigue. Make fatigue the central focus and symptom, until it becomes the only symptom and focus. Get a big pot and fill it with as many fatiguing illnesses as possible. Hide the disease in this pot and give the pot a name that emphasizes fatigue. Convince people that everything in the pot is the same thing. Say nothing is known about what’s in the pot. Emphasize that it’s a mystery. Keep repeating this until people believe it without question. Repeat it for decades. If anyone finds out anything about one thing in the pot, dismiss that evidence on the basis that it doesn’t apply to everything in the pot. Next, conflate this newly named fatiguing illness pot with emotional problems and trauma. Cement the link several times between trauma and what’s in the pot, include the disease hidden there among all the other fatiguing illnesses. Emphasize as many times as you can that there is no virus of any kind involved. Do whatever you have to, to break the link between a virus and the disease hidden in the pot. Repeat this so many times and in so many ways, that the people with the disease begin to believe it themselves. Make sure no one looks in the right places for a virus. If anyone finds a virus, immediately provide an alternate explanation or discredit them. Create as much confusion as possible and plant as many doubts as possible re viruses and the disease. Now, tie in phobias and fear. Suggest de-conditioning as a result of phobia and fear of exercise. Prescribe graded exercise and psychiatric intervention as treatment. Equate objection to this treatment with laziness and being uncooperative. Spread this misinformation and disinformation far and wide. Send people into patient support groups to spread this narrative. Do it in such a way that they seem perfectly ordinary. Cast just enough doubt on any truth to make people question their own sanity without appearing obvious. Set up patient charities and orgs to feed this misinformation to patients. Make those dispensing the misinformation seem trusted and caring, so everyone will buy the narrative. Anytime anyone gets close to lifting the disease out of the pot and sweeping away the misinformation to reveal the truth, have your countermove ready. Create another new name and transfer the disease to another pot full of the same fatiguing illnesses as the first pot. Stir this new pot well, until everything dissolves and blends together. When the new name is rejected, quickly pivot. Keep the fatigue name from the first pot and join it with the name of the hidden disease. Tell everyone they are the same thing as many times as necessary. Promote the hell out of this new mix. Tell people it’s for their own good, that it will help them. Label anyone who objects to or questions the above paradigm as a "troublemaker", a "divider of the community", "mentally dysfunctional", "narrow", "too focused on the past", and a "holder back of progress". Engage high profile, trusted names in the community to spread this narrative. Further gaslight anyone who objects to it. Brand them divisive and trouble-making. Poison people’s minds against them so that anything they say is perceived as a lie or "crazy". This is how you hide a disease once called "ATYPICAL POLIO", with sufferers who have a quality of life and disease burden comparable to an AIDS patient 2 months from death - in plain sight. ~Becca Waddle
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 | UPDATED: 02 May 2021 The ME INTERNATIONAL CONSENSUS PRIMER (ICP) for medical practitioners is a valuable tool for working with your doctor to get diagnosis and treatment for myalgic encephalomyelitis (ME). Unfortunately, very few doctors are familiar with this important information. |
The Challenge
Doctors have limited time to devote to diagnosis and treatment. For complex diseases, like ME, doctors are at a disadvantage. ME, if mentioned at all, is not adequately covered in medical school or in continuing medical education. The latest research that helps experts and patients better understand ME does not reach the average doctor. This lack of proper information leads to many doctors using outdated information that includes harmful and or ineffective treatments including graded exercise therapy and cognitive behavior therapy.
The Situation
In 2012 expert clinicians put together the ME ICP to guide doctors in diagnosis and treatment of ME. The ICP provides information to better understand the biological abnormalities seen in ME that help guide best treatment practices. Some patients find compassionate doctors willing to use the information in the ICP to better care for their ME patients. Unfortunately, most doctors are unaware of what the ICP has to offer.
A Path Forward
ME International’s team of volunteers came together to create a two page info sheet which introduces doctors to the value of the ICP.
The goal was to create an easy to read information sheet to help doctors better care for ME patients.
The result is a doctor handout titled:
A MEDICAL PRACTITIONERS GUIDE FOR DIAGNOSING AND TREATING MYALGIC ENCEPHALOMYELITIS (ME)
There are four (4) versions:
The goal was to create an easy to read information sheet to help doctors better care for ME patients.
The result is a doctor handout titled:
A MEDICAL PRACTITIONERS GUIDE FOR DIAGNOSING AND TREATING MYALGIC ENCEPHALOMYELITIS (ME)
There are four (4) versions:
- color version with hyperlinks.
- black & white version for printing out (minimizes use of ink)
- in het Nederlands - Dutch
- en Español - Spanish
Feedback Appreciated
Please let us know if this document helped you do any of the following:
- Helped you better understand ME
- Empowered you to seek better professional care
- Improved your relationship with your doctor
- Led to more lab testing
- Led to improved treatment
In Addition
Thank you to Dr. Nigel Speight for the powerful message to physicians in the final quote on this doctor handout.
Dr. Speight is a paediatrician from the northeast of the UK (Durham) with a longstanding special interest in paediatric ME. He is the medical/paediatric adviser to several UK charities including the ME Association, the TYMES Trust and the 25% group. He has written a case report, Severe ME in Children, which can be found on the Severe ME page on our website and Dr. Speight was a co-author of the International Consensus Criteria for ME and the Paediatric Primer.
Dr. Speight is a paediatrician from the northeast of the UK (Durham) with a longstanding special interest in paediatric ME. He is the medical/paediatric adviser to several UK charities including the ME Association, the TYMES Trust and the 25% group. He has written a case report, Severe ME in Children, which can be found on the Severe ME page on our website and Dr. Speight was a co-author of the International Consensus Criteria for ME and the Paediatric Primer.
Authored by Colleen Steckel
UPDATED 20 Mar 2021 - In November 2020 it was decided by the ME International Board to ask for donations that would cover the cost of purchase and shipment of pulse oximeters to members.
NOTE: If you are a member of ME International and would like a pulse oximeter, please send a request email to Admin@ME-International.org with your name and address.
All of the board members who have myalgic encephalomyelitis have used pulse oximeters and other devices to measure heart rate and recognized the importance of having this vital information.
In preparation for sending out pulse oximeters the volunteers created an explanation sheet about the usefulness of pulse oximeters. Access the sheet HERE: https://www.me-international.org/uploads/1/2/7/6/127602984/pulse_oximeter_info_sheet_201231.pdf
Be aware that multiple factors can affect the accuracy of a pulse oximeter reading, such as poor circulation, skin pigmentation, skin thickness, skin temperature, current tobacco use, and use of fingernail polish. To get the best reading from a pulse oximeter:
In December enough donations came in to purchase the first 50 BodyMed pulse oximeters at a discount through Milliken Medical of Ohio. A Thrivent Financial “Action Team” grant of $250 as part of their #LiveGenerously program was secured which helped cover the purchase. Individual donations came in to cover the remaining cost for the purchase as well as supplies and mailing costs.
Requests quickly came in from around the world. On January 8, 2021 the first shipment of pulse oximeters was sent out to members in the US, Canada, Norway, Australia and the UK. The entire project is managed by volunteers. Requests will be filled on a first come first serve basis. We are in the process of sending out the first 50.
Funds are needed to continue fulfilling requests. Please donate so we can continue this project. To see more information and to donate go to: https://www.me-international.org/pulse_oximeters.html A thank you to Lisa Edelsward (Canada) for the beautiful poem graphic on this donation page.
NOTE: If you are a member of ME International and would like a pulse oximeter, please send a request email to Admin@ME-International.org with your name and address.
All of the board members who have myalgic encephalomyelitis have used pulse oximeters and other devices to measure heart rate and recognized the importance of having this vital information.
In preparation for sending out pulse oximeters the volunteers created an explanation sheet about the usefulness of pulse oximeters. Access the sheet HERE: https://www.me-international.org/uploads/1/2/7/6/127602984/pulse_oximeter_info_sheet_201231.pdf
Be aware that multiple factors can affect the accuracy of a pulse oximeter reading, such as poor circulation, skin pigmentation, skin thickness, skin temperature, current tobacco use, and use of fingernail polish. To get the best reading from a pulse oximeter:
- Follow the manufacturer’s instructions for use.
- When placing the oximeter on your finger, make sure your hand is warm, relaxed, and held below the level of the heart. Remove any fingernail polish on that finger.
- Sit still and do not move the part of your body where the pulse oximeter is located.
- Wait a few seconds until the reading stops changing and displays one steady number.
In December enough donations came in to purchase the first 50 BodyMed pulse oximeters at a discount through Milliken Medical of Ohio. A Thrivent Financial “Action Team” grant of $250 as part of their #LiveGenerously program was secured which helped cover the purchase. Individual donations came in to cover the remaining cost for the purchase as well as supplies and mailing costs.
Requests quickly came in from around the world. On January 8, 2021 the first shipment of pulse oximeters was sent out to members in the US, Canada, Norway, Australia and the UK. The entire project is managed by volunteers. Requests will be filled on a first come first serve basis. We are in the process of sending out the first 50.
Funds are needed to continue fulfilling requests. Please donate so we can continue this project. To see more information and to donate go to: https://www.me-international.org/pulse_oximeters.html A thank you to Lisa Edelsward (Canada) for the beautiful poem graphic on this donation page.
(updated 09/02/20)
WHY DO BRAIN SCANS? -
UNDERSTANDING ME & SPECT BRAIN SCANS
SPECT scans measure how blood flows into the brain at a point in time. Blood flow is impacted by many factors including diet, lifestyle, medications, age, and genetics. This is different than an MRI which looks for any abnormalities in the structure of the brain. Another option for testing is a functional MRI (fMRI) which looks at the brain in action (used mostly in research) and not available to anyone who has metal implants. Another thing to consider is an fMRI does not emit radiation, as magnetic forces are used to collect information. In a SPECT scan, the patient is exposed to a small amount of radiation.
More information about SPECT scans can be found in Dr Hyde’s writings from the Nightingale Research Foundation. The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis (M.E.) (2016) booklet with information presented at the IACFS/ME Conference Fort Lauderdale, Florida and Cornell University (2016) has detailed SPECT information starting on page 11.
A Sept 2019 thesis paper titled Quantitative Electroencephalographic Assessment of ME/CFS: Support for a Novel Diagnostic Protocol by Andrew E Pellegrini discusses the findings of Dr. Hyde and showed qEEG testing could also be used to find abnormalities in ME patients.
MY EXPERIENCE GETTING A SPECT SCAN
In June 2020, my husband took me for two consecutive SPECT scans; a “thinking” scan on day one and a “resting brain” scan on day 2.
Working with CereHealth® personnel at CereScan®, who answered my multitude of questions, helped me feel confident this was a worthwhile endeavor to get the answers about the changes in cognition I had seen as a result of acquiring myalgic encephalomyelitis in 1989.
PREPARING FOR THE SCANS
A lengthy history/symptom questionnaire was done via my home computer. Options for filling out the questionnaire include online, pen and paper, or verbal (where CereHealth staff walks the patient through each question). Filling out the form can be done in multiple sittings.
A cognitive assessment was taken using my home computer. This had to be done all in one sitting and consisted of several different kinds of memory and cognition exercises.
NOTE: There is a loud bell sound at the beginning which shocked me as I wasn’t expecting it and I had my volume set too high. An improvement to their test would be to do a volume level test to make sure it’s at a reasonable volume and a notification so the sound is expected. The results from that showed very low scores in psychomotor speed, reaction time, simple attention and motor speed. Also, below average composite memory and verbal memory were noted. Those findings coincide with my daily experience.
Shortly before leaving for the scans, I did an intake interview over the phone. This covered making sure I knew what to expect and a chance to get any last-minute questions I had answered.
The day before the test, I stopped some medications that would interfere with the scans and was given routine instructions to avoid caffeine, alcohol, nicotine and marijuana.
NOTE: All of my work with CereHealth in Colorado was done via phone/email.
GETTING THE SCANS
CereHealth is based in Colorado but has coordinated with other outpatient radiology facilities to perform the test to their specifications. As everyone’s travel experience will be different, I won’t go into those details other than to say that traveling to Florida during the COVID-19 outbreak was a daunting experience, but the lab where I had the test done was making good efforts to keep everyone safe.
Day 1 – Scan at 8 am. Travel time to the office was about 40 minutes so we gave ourselves an hour to get there. Several warnings were given in the paperwork that the radiopharmaceutical injection used is time sensitive and being late to the appointment could result in not being able to perform the test and me being charged for the radiopharmaceutical.
The infusion is technetium Tc99m exametazime. I am highly reactive to most things and was concerned despite reassurances that others have had no issues. I felt no reaction at all to this injection. As is common for me, I tasted the saline used to prep the infusion line but, other than that, noticed no effects at all.
DAY 1 – CONCENTRATION – Process Details
As can be seen from the picture, I was allowed to wear my face mask for the procedure. This is nothing like an MRI. There is no thumping. The sounds I heard were closer to the sounds one would hear getting a dental x-ray; movement of the machine and then silence with occasional mechanical clicks.
As I understood the importance of not moving during the scans, I spoke with them about my involuntary muscle twitching and was pleased to learn they had a head strap as well as a Velcro body wrap that would help me to stay still. The head strap was comfortable across my forehead and the body wrap covered my upper body area using Velcro so it could be tightened to comfort. It was not uncomfortable and I felt more secure knowing that if I had a muscle spasm it was unlikely to affect the scans. A light blanket helped keep me from getting chilled during the procedure.
Here is the list of all of the partnering clinic locations CereHealth uses at this time:
According to CereHealth’s clinician: “CereScan’s affiliated clinics are located in areas where the GE radiopharmaceutical is accessible. We are limited by this accessibility and may not be able to partner with clinics in certain states/regions. Our sixteen clinics follow CereScan’s specific imaging protocols and their nuclear medicine technologists/staff are trained by CereScan’s Chief Nuclear Medicine Technologist.”
TEST RESULTS
The SPECT scans are read using CereMetrix®, which is an FDA-cleared radiology tool for SPECT analysis. Results are expected within about 2 weeks. These were emailed to me through a HIPAA secure email service. They were also sent to my doctor.
My results: “The nature, location, and pattern of these abnormalities is primarily consistent with the scientific literature pertaining to traumatic brain injury (TBI).”
An option at CereHealth after getting the lab results is to do a consultation which may not be covered by insurance.
The consultation included the overall understanding of how the scans were read. It was noted that the interpreting physician who read the scans has many years of experience and was not given my history or diagnosis prior to the reading; thus, doing a blind reading. He did review my medical history after the reading to provide context to the information found. This radiologist has a lot of experience and has testified as an expert witness.
As part of the video chat consultation, the clinician walked me through the scans using the software used to read the scans while I followed along on my computer screen. She was able to move images of the brain around and show inner regions and discuss the areas that showed abnormal blood flow. The interpreting physician read the scans using 2 points of deviation from normal. During the consultation, the clinician was able to alter the program to see my scans at 1.65 deviation of normal which expanded the areas of abnormality. (2 points of deviation are normal for reading brain scans.)
The findings helped to explain some of the following symptoms I deal with regularly: disorientation to time/place, headaches, muscle pain, confusion, difficulty with concentration, distractibility, disorganization, visual processing, depth perception, difficulty learning new things, losing things, problems with language/word finding, as well as long and short term memory problems.
NOTE: This consultation does not include a written report, so it is important to take good notes to look back on if needed.
CereHealth can provide a set of images (which are also included on your imaging report), and a CD of the raw data at your request. They can send the SPECT information to your neurologist, and their clinician can provide support if they have questions.
WHY 2 SCANS?
The resting scan is the normal method and that is the scan used to compare to a population database. The “thinking” scan has no population data to compare to so is only compared to the patient’s resting scan.
The following is a quote from the CereHealth clinician: “A normal, healthy response to the concentration task means that blood flow increases to the brain when it works harder. (Think about it this way: when you are running, your heart pumps faster and more blood flows through the heart. Same with the brain, but instead of running, you are thinking).
In cases where TBIs or other neurological conditions are present, we will actually see the opposite response, where blood flow decreases in the brain during concentration. Basically, the harder you ask your brain to work, the more it shuts down. This is a paradox (it is doing the inverse of what it should be doing) and the brain is deactivating (i.e. working less). This deactivation can come from a TBI, toxic injury, and is a common finding in a person with ADD/ADHD.”
WHY DO BRAIN SCANS? -
- Encephalomyelitis means: inflammation of the brain and spinal cord
- World Health Organization coded ME as a neurological disease in 1969.
- Research evidence demonstrates that ME has both structural and functional brain consequences including reduced resting brain blood flow, differing connectivity among brain regions, alterations of whole brain metabolism, reduced gray and white matter volume, increased presence of white matter lesions, increased neuroinflammation and altered brain function during cognition. See links to some brain research in the introduction of “Neural consequences of post-exertion malaise in ME/CFS”
- The ME International Consensus Primer (based on the International Consensus Criteria) was written in 2012 by a group of ME experts who had more than 500 years combined experience with myalgic encephalomyelitis. The Primer indicates the importance for brain scans to rule out other conditions as well as testing that can help confirm an ME diagnosis. Page 4 includes SPECT scan testing info to look for areas of hypoperfusion (reduced amount of blood flow) which are characteristic of ME.
UNDERSTANDING ME & SPECT BRAIN SCANS
SPECT scans measure how blood flows into the brain at a point in time. Blood flow is impacted by many factors including diet, lifestyle, medications, age, and genetics. This is different than an MRI which looks for any abnormalities in the structure of the brain. Another option for testing is a functional MRI (fMRI) which looks at the brain in action (used mostly in research) and not available to anyone who has metal implants. Another thing to consider is an fMRI does not emit radiation, as magnetic forces are used to collect information. In a SPECT scan, the patient is exposed to a small amount of radiation.
More information about SPECT scans can be found in Dr Hyde’s writings from the Nightingale Research Foundation. The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis (M.E.) (2016) booklet with information presented at the IACFS/ME Conference Fort Lauderdale, Florida and Cornell University (2016) has detailed SPECT information starting on page 11.
A Sept 2019 thesis paper titled Quantitative Electroencephalographic Assessment of ME/CFS: Support for a Novel Diagnostic Protocol by Andrew E Pellegrini discusses the findings of Dr. Hyde and showed qEEG testing could also be used to find abnormalities in ME patients.
MY EXPERIENCE GETTING A SPECT SCAN
In June 2020, my husband took me for two consecutive SPECT scans; a “thinking” scan on day one and a “resting brain” scan on day 2.
Working with CereHealth® personnel at CereScan®, who answered my multitude of questions, helped me feel confident this was a worthwhile endeavor to get the answers about the changes in cognition I had seen as a result of acquiring myalgic encephalomyelitis in 1989.
PREPARING FOR THE SCANS
A lengthy history/symptom questionnaire was done via my home computer. Options for filling out the questionnaire include online, pen and paper, or verbal (where CereHealth staff walks the patient through each question). Filling out the form can be done in multiple sittings.
A cognitive assessment was taken using my home computer. This had to be done all in one sitting and consisted of several different kinds of memory and cognition exercises.
NOTE: There is a loud bell sound at the beginning which shocked me as I wasn’t expecting it and I had my volume set too high. An improvement to their test would be to do a volume level test to make sure it’s at a reasonable volume and a notification so the sound is expected. The results from that showed very low scores in psychomotor speed, reaction time, simple attention and motor speed. Also, below average composite memory and verbal memory were noted. Those findings coincide with my daily experience.
Shortly before leaving for the scans, I did an intake interview over the phone. This covered making sure I knew what to expect and a chance to get any last-minute questions I had answered.
The day before the test, I stopped some medications that would interfere with the scans and was given routine instructions to avoid caffeine, alcohol, nicotine and marijuana.
NOTE: All of my work with CereHealth in Colorado was done via phone/email.
GETTING THE SCANS
CereHealth is based in Colorado but has coordinated with other outpatient radiology facilities to perform the test to their specifications. As everyone’s travel experience will be different, I won’t go into those details other than to say that traveling to Florida during the COVID-19 outbreak was a daunting experience, but the lab where I had the test done was making good efforts to keep everyone safe.
Day 1 – Scan at 8 am. Travel time to the office was about 40 minutes so we gave ourselves an hour to get there. Several warnings were given in the paperwork that the radiopharmaceutical injection used is time sensitive and being late to the appointment could result in not being able to perform the test and me being charged for the radiopharmaceutical.
The infusion is technetium Tc99m exametazime. I am highly reactive to most things and was concerned despite reassurances that others have had no issues. I felt no reaction at all to this injection. As is common for me, I tasted the saline used to prep the infusion line but, other than that, noticed no effects at all.
DAY 1 – CONCENTRATION – Process Details
- Explain and set up IV line
- Give electronic tablet and have patient start the test activity
- Wait 5 minutes and inject Tc99M
- Wait 10 minutes and take tablet away
- Scan after 1 hour post injection (scan takes about 20 minutes)
- Explain and set up IV line
- Put headphones and eye mask on
- Wait 15 minutes to inject Tc99M
- Scan after 1 hour post injection (scan takes about 20 minutes)
As can be seen from the picture, I was allowed to wear my face mask for the procedure. This is nothing like an MRI. There is no thumping. The sounds I heard were closer to the sounds one would hear getting a dental x-ray; movement of the machine and then silence with occasional mechanical clicks.
As I understood the importance of not moving during the scans, I spoke with them about my involuntary muscle twitching and was pleased to learn they had a head strap as well as a Velcro body wrap that would help me to stay still. The head strap was comfortable across my forehead and the body wrap covered my upper body area using Velcro so it could be tightened to comfort. It was not uncomfortable and I felt more secure knowing that if I had a muscle spasm it was unlikely to affect the scans. A light blanket helped keep me from getting chilled during the procedure.
Here is the list of all of the partnering clinic locations CereHealth uses at this time:
- Littleton, Colorado (headquarters)
- Sheffield, Alabama
- Scottsdale, Arizona
- Tucson, Arizona
- Encinitas, California
- Laguna Hills, California
- San Francisco, California
- Naples, Florida
- Ocoee, Florida (Orlando area)
- Tampa, Florida
- Arlington Heights, Illinois (Northern Chicago)
- Metairie, Louisiana
- Monroe, New York
- El Paso, Texas
- Houston, Texas
- Dallas, Texas
According to CereHealth’s clinician: “CereScan’s affiliated clinics are located in areas where the GE radiopharmaceutical is accessible. We are limited by this accessibility and may not be able to partner with clinics in certain states/regions. Our sixteen clinics follow CereScan’s specific imaging protocols and their nuclear medicine technologists/staff are trained by CereScan’s Chief Nuclear Medicine Technologist.”
TEST RESULTS
The SPECT scans are read using CereMetrix®, which is an FDA-cleared radiology tool for SPECT analysis. Results are expected within about 2 weeks. These were emailed to me through a HIPAA secure email service. They were also sent to my doctor.
My results: “The nature, location, and pattern of these abnormalities is primarily consistent with the scientific literature pertaining to traumatic brain injury (TBI).”
An option at CereHealth after getting the lab results is to do a consultation which may not be covered by insurance.
The consultation included the overall understanding of how the scans were read. It was noted that the interpreting physician who read the scans has many years of experience and was not given my history or diagnosis prior to the reading; thus, doing a blind reading. He did review my medical history after the reading to provide context to the information found. This radiologist has a lot of experience and has testified as an expert witness.
As part of the video chat consultation, the clinician walked me through the scans using the software used to read the scans while I followed along on my computer screen. She was able to move images of the brain around and show inner regions and discuss the areas that showed abnormal blood flow. The interpreting physician read the scans using 2 points of deviation from normal. During the consultation, the clinician was able to alter the program to see my scans at 1.65 deviation of normal which expanded the areas of abnormality. (2 points of deviation are normal for reading brain scans.)
The findings helped to explain some of the following symptoms I deal with regularly: disorientation to time/place, headaches, muscle pain, confusion, difficulty with concentration, distractibility, disorganization, visual processing, depth perception, difficulty learning new things, losing things, problems with language/word finding, as well as long and short term memory problems.
NOTE: This consultation does not include a written report, so it is important to take good notes to look back on if needed.
CereHealth can provide a set of images (which are also included on your imaging report), and a CD of the raw data at your request. They can send the SPECT information to your neurologist, and their clinician can provide support if they have questions.
WHY 2 SCANS?
The resting scan is the normal method and that is the scan used to compare to a population database. The “thinking” scan has no population data to compare to so is only compared to the patient’s resting scan.
The following is a quote from the CereHealth clinician: “A normal, healthy response to the concentration task means that blood flow increases to the brain when it works harder. (Think about it this way: when you are running, your heart pumps faster and more blood flows through the heart. Same with the brain, but instead of running, you are thinking).
In cases where TBIs or other neurological conditions are present, we will actually see the opposite response, where blood flow decreases in the brain during concentration. Basically, the harder you ask your brain to work, the more it shuts down. This is a paradox (it is doing the inverse of what it should be doing) and the brain is deactivating (i.e. working less). This deactivation can come from a TBI, toxic injury, and is a common finding in a person with ADD/ADHD.”
My scans showed this abnormality as can be seen in this comparison between my brain at baseline and during concentration.
Comparing my results to the IC Primer
Part of the consultation explained the difference between Segami software (what is shown in the IC Primer) and the CereMetrix software. CereHealth previously used Segami software so they have experience to discuss comparison. Some limitations to Segami include an inability to share the scan technology for others to review the scans as well as Segami did not have the details in the subcortical area of the brain that Ceremetrix provides. (Info on Segami from 2018 so that may have changed since then.)
The top picture on the right, from page 4 of the IC Primer, shows a white area. That area is a lack of information which my scans included. My scans did not show the same pattern of blood flow issues as shown in the Primer, but it did show some areas that overlapped.
“SPECT imaging can identify what is called a “toxic/hypoxic encephalopathy”. This type of neurological condition can result from a single exposure and/or chronic exposure to an environmental toxin such as carbon monoxide, mold, heavy metals, Lyme disease, HHV-6 (and other viruses) and even substance abuse (alcohol, cocaine, heroin, etc.). This process can also occur after a hypoxic event, where the brain was deprived of oxygen (such as a near-drowning experience, problems with anesthesia, anaphylaxis, etc.).
A toxic/hypoxic encephalopathy in SPECT imaging is described as a “patchy, diffuse, scattered pattern” of reduced blood flow. In this type of injury, almost all brain areas can be affected, including the subcortical structures. In a traumatic brain injury pattern, we see what are called “focal, dominant, or more specific” areas of reduced blood flow. In many cases, the mechanism of injury relates to where the radiologist sees damage in the brain. For example, a football player who makes helmet-to-helmet contact and has a concussion/TBI may show a focal area of reduced blood flow in his forehead region (frontal lobe), and other parts of the brain may appear unaffected.” The source for this information is the clinician at CereHealth
COST
Here is the information for insurance:
CereHealth indicated that one resting scan should be sufficient to see any abnormalities that might help diagnose ME. I found the comparison between the two provided information that may prove valuable. The current cash rates for this procedure are:
WAS IT WORTH IT FOR ME?
Prior to this test, I had only one other brain scan which was an MRI to rule out Multiple Sclerosis. There were no findings noted by the neurologist on the MRI. Because ME can be mistaken for MS, it is important early in the diagnosis process to have MS ruled out.
Confirming an ME diagnosis is a long process. Getting these SPECT scan results, even though it was 30 years since onset, gave me and my medical team a better understanding of what was happening and verified my limitations were based on biological issues and had nothing to do with my attitude.
I am grateful that my scans could also benefit future research. Early in the process I was excited to learn that CereHealth has conducted multiple studies and participated in projects with various Contract Research Organizations. CereHealth’s software has the ability to gather a wealth of deidentified patient data to run correlational analyses and quantify SPECT imaging data. Their team has the connections to quickly mobilize an active or retrospective study to further examine complex neurological conditions. They encourage patients to authorize the release of their health information into their deidentified database so these studies may be performed to contribute to the medical field and benefit other patients in the future. I gave permission to have my scans available for future study.
CONFIRMING AN ME DIAGNOSIS IS A LONG ROAD
One of the benefits of the IC Primer is it provides a flashlight in the dark forest we all wander through trying to find answers. Using the IC Primer has provided me insight into the symptoms and disease process to feel confident I have been properly diagnosed. It has also given me management and treatment tools to improve my quality of life.
There is nothing easy about living with ME, but making sure our medical team is using the most accurate and up to date information and proper testing can significantly improve quality of life for those dealing with ME.
Colleen Steckel – Sudden onset Myalgic Encephalomyelitis August 1989
Disclaimer: I was given no discount or financial gain from CereHealth. This is my personal experience and not to be considered medical advice.
“SPECT imaging can identify what is called a “toxic/hypoxic encephalopathy”. This type of neurological condition can result from a single exposure and/or chronic exposure to an environmental toxin such as carbon monoxide, mold, heavy metals, Lyme disease, HHV-6 (and other viruses) and even substance abuse (alcohol, cocaine, heroin, etc.). This process can also occur after a hypoxic event, where the brain was deprived of oxygen (such as a near-drowning experience, problems with anesthesia, anaphylaxis, etc.).
A toxic/hypoxic encephalopathy in SPECT imaging is described as a “patchy, diffuse, scattered pattern” of reduced blood flow. In this type of injury, almost all brain areas can be affected, including the subcortical structures. In a traumatic brain injury pattern, we see what are called “focal, dominant, or more specific” areas of reduced blood flow. In many cases, the mechanism of injury relates to where the radiologist sees damage in the brain. For example, a football player who makes helmet-to-helmet contact and has a concussion/TBI may show a focal area of reduced blood flow in his forehead region (frontal lobe), and other parts of the brain may appear unaffected.” The source for this information is the clinician at CereHealth
COST
Here is the information for insurance:
- SPECT imaging falls under radiology
- CPT codes:
- 78803 - Radiopharmaceutical localization of tumor or distribution of radiopharmaceutical agent(s); tomographic (SPECT)
- A9521 - Technetium tc-99m exametazime, diagnostic, per study dose
- 78835 - Other Diagnostic Nuclear Medicine Procedures
- 99205 - New Patient Office or Other Outpatient Services
- 90889 - Other Psychiatric Services or Procedures
CereHealth indicated that one resting scan should be sufficient to see any abnormalities that might help diagnose ME. I found the comparison between the two provided information that may prove valuable. The current cash rates for this procedure are:
- $50 Cognitive assessment (computer from home – optional)
- $50 Psychiatric Screen (completed during the intake phone call – optional)
- $2,600 1 resting brain SPECT scan – reimbursable by some insurance (Cerescan staff can help look into what is covered)
- $4,400 total for two scans (resting and active) (Second scan may need follow-up paperwork to get insurance to cover cost and they may not cover this second scan.)
- $150 Consultation (optional)
WAS IT WORTH IT FOR ME?
Prior to this test, I had only one other brain scan which was an MRI to rule out Multiple Sclerosis. There were no findings noted by the neurologist on the MRI. Because ME can be mistaken for MS, it is important early in the diagnosis process to have MS ruled out.
Confirming an ME diagnosis is a long process. Getting these SPECT scan results, even though it was 30 years since onset, gave me and my medical team a better understanding of what was happening and verified my limitations were based on biological issues and had nothing to do with my attitude.
I am grateful that my scans could also benefit future research. Early in the process I was excited to learn that CereHealth has conducted multiple studies and participated in projects with various Contract Research Organizations. CereHealth’s software has the ability to gather a wealth of deidentified patient data to run correlational analyses and quantify SPECT imaging data. Their team has the connections to quickly mobilize an active or retrospective study to further examine complex neurological conditions. They encourage patients to authorize the release of their health information into their deidentified database so these studies may be performed to contribute to the medical field and benefit other patients in the future. I gave permission to have my scans available for future study.
CONFIRMING AN ME DIAGNOSIS IS A LONG ROAD
One of the benefits of the IC Primer is it provides a flashlight in the dark forest we all wander through trying to find answers. Using the IC Primer has provided me insight into the symptoms and disease process to feel confident I have been properly diagnosed. It has also given me management and treatment tools to improve my quality of life.
There is nothing easy about living with ME, but making sure our medical team is using the most accurate and up to date information and proper testing can significantly improve quality of life for those dealing with ME.
Colleen Steckel – Sudden onset Myalgic Encephalomyelitis August 1989
Disclaimer: I was given no discount or financial gain from CereHealth. This is my personal experience and not to be considered medical advice.
UPDATED 5/30/20 - Added links to the scripts of both videos (below).
ME International has recently released its first video, entitled "Myalgic Encephalomyelitis - Understanding Diagnosis" on our YouTube Channel.
Click HERE for the LONG version - Transcript
Click HERE for the SHORT version - Transcript
Topics include:
Many different disease descriptions have been created since the recognition and labeling of ME by Dr. Ramsay in the 1950s. Several criteria later broadened the patient population to include many patients who did not fit the original description.
In 2011 a group of experts with over 500 years of combined experience created a consensus criteria known as the International Consensus Criteria (#MEICC). ME-International supports the adoption of the #MEICC and the International Consensus Primer for ME (#MEICPrimer), which is a comprehensive primer for doctors.
We strongly believe that adoption of the #MEICC will ensure research is focused on the distinct ME patient population without including patients who fall into the wider category known as ME/CFS-SEID or CFS-Fukuda.
These videos discuss the history of ME, the lived experience, including recognition of the most severe patients, a full description of how to diagnose using the International Consensus Criteria as well as the challenges of getting a diagnosis. Proper diagnosis is vital for patients to get proper treatment.
ME-International believes that worldwide adoption of the #MEICC to diagnose and treat, is the fastest way to improve the quality of life of people with ME.
Information not to be considered medical advice.
https://www.ME-International.org
https://www.meadvocacy.org/resources
https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html
ME ICC: https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02428.x
IC Primer: https://d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/2292/attachments/original/1554817421/Myalgic_Encephalomyelitis_International_Consensus_Primer_2012.pdf?1554817421
Please sign the #PwME4ICC petition at Change.org at https://www.change.org/p/the-us-department-of-health-and-human-services-cdc-adopt-the-distinct-disease-myalgic-encephalomyelitis-me-as-defined-by-icc-now
ME International has recently released its first video, entitled "Myalgic Encephalomyelitis - Understanding Diagnosis" on our YouTube Channel.
Click HERE for the LONG version - Transcript
Click HERE for the SHORT version - Transcript
Topics include:
- What is Myalgic Encephalomyelitis?
- ME: The Lived Experience
- How Does ME Relate to CFS?
- Getting A ME Diagnosis
- Confirming A Diagnosis of ME
- What Is Needed?, and
- How To Improve the Quality of Life for ME Patients
Many different disease descriptions have been created since the recognition and labeling of ME by Dr. Ramsay in the 1950s. Several criteria later broadened the patient population to include many patients who did not fit the original description.
In 2011 a group of experts with over 500 years of combined experience created a consensus criteria known as the International Consensus Criteria (#MEICC). ME-International supports the adoption of the #MEICC and the International Consensus Primer for ME (#MEICPrimer), which is a comprehensive primer for doctors.
We strongly believe that adoption of the #MEICC will ensure research is focused on the distinct ME patient population without including patients who fall into the wider category known as ME/CFS-SEID or CFS-Fukuda.
These videos discuss the history of ME, the lived experience, including recognition of the most severe patients, a full description of how to diagnose using the International Consensus Criteria as well as the challenges of getting a diagnosis. Proper diagnosis is vital for patients to get proper treatment.
ME-International believes that worldwide adoption of the #MEICC to diagnose and treat, is the fastest way to improve the quality of life of people with ME.
Information not to be considered medical advice.
https://www.ME-International.org
https://www.meadvocacy.org/resources
https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html
ME ICC: https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02428.x
IC Primer: https://d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/2292/attachments/original/1554817421/Myalgic_Encephalomyelitis_International_Consensus_Primer_2012.pdf?1554817421
Please sign the #PwME4ICC petition at Change.org at https://www.change.org/p/the-us-department-of-health-and-human-services-cdc-adopt-the-distinct-disease-myalgic-encephalomyelitis-me-as-defined-by-icc-now
Authored by John Duncan UPDATED 4/29/20
Perhaps one of the most characteristic signs of Myalgic Encephalomyelitis (ME) is the intolerance to any type of exertion whether it is of a passive type brought on by surroundings (hearing a voice, seeing lights), or an effortful type (lifting a cup, holding a conversation). Given this bizarre sign, it is only natural that for many of us and many doctors, the mitochondrion has been a perennial suspect.
Unfortunately, by the end of the 1990s many early findings regarding the mitochondria, such as increased enteroviral RNA in patient's muscle mitochondria [1], deletions of mitochondrial DNA [2][3] and abnormal mitochondrial morphology [2][4] were not followed up or not replicated by other studies.
However, virtually all of the research in the 1990s and 2000s is fraught with inappropriately using heterogeneous groups of patients due to bad definitions, small sample sizes and widely varying diagnostic experience by study investigators. When two studies are at odds it is often unclear which to accept and which to reject. In the case of the mitochondria, it is very tempting to believe some of the reports of abnormalities were not given a fair chance due to follow-up studies selecting different groups of patients as a consequence of the Fukuda or Oxford Criteria.
Unfortunately, by the end of the 1990s many early findings regarding the mitochondria, such as increased enteroviral RNA in patient's muscle mitochondria [1], deletions of mitochondrial DNA [2][3] and abnormal mitochondrial morphology [2][4] were not followed up or not replicated by other studies.
However, virtually all of the research in the 1990s and 2000s is fraught with inappropriately using heterogeneous groups of patients due to bad definitions, small sample sizes and widely varying diagnostic experience by study investigators. When two studies are at odds it is often unclear which to accept and which to reject. In the case of the mitochondria, it is very tempting to believe some of the reports of abnormalities were not given a fair chance due to follow-up studies selecting different groups of patients as a consequence of the Fukuda or Oxford Criteria.
The Need for Good Selection Criteria in Practice
The problem of selecting a single disease picture and not many, can be solved by using a rigorous criteria of selection such as the International Consensus Criteria (ICC). It can likely be decreased by using criteria of selection which require the cardinal signs and symptoms of Myalgic Encephalomyelitis; such as the Canadian Consensus Criteria (CCC). Lastly, if the patient group is very severe and has been tested for alternative diagnoses, the study is more likely to be applicable to ME patients at large. This is assumed because many disorders like Sleep Apnea, Chronic Headaches, Nonspecific chronic pain which fall into a broad criteria (e.g. CDC's Fukuda definition) are not likely to have the severe drop of function seen in the worst-off ME patients.
Hopefully the use of stringent criteria for ME, larger study sizes, and the ability to group patients by temporal stages, will prevent current studies from repeating the mishmash of past decades.
The problem of selecting a single disease picture and not many, can be solved by using a rigorous criteria of selection such as the International Consensus Criteria (ICC). It can likely be decreased by using criteria of selection which require the cardinal signs and symptoms of Myalgic Encephalomyelitis; such as the Canadian Consensus Criteria (CCC). Lastly, if the patient group is very severe and has been tested for alternative diagnoses, the study is more likely to be applicable to ME patients at large. This is assumed because many disorders like Sleep Apnea, Chronic Headaches, Nonspecific chronic pain which fall into a broad criteria (e.g. CDC's Fukuda definition) are not likely to have the severe drop of function seen in the worst-off ME patients.
Hopefully the use of stringent criteria for ME, larger study sizes, and the ability to group patients by temporal stages, will prevent current studies from repeating the mishmash of past decades.
Recently, in trying to develop an assay for ME, the Ron Davis group at Stanford found an altered electrical signal (impedance) in patients' cells when subjected to osmotic stress [5]. This suggests in a harsh environment patients' cells don't have the energy to maintain their voltage gradients–unlike normal cells which do. Besides its usefulness as a diagnostic, Davis's finding also implicates deficient cellular energy, and therefore the mitochondria, in ME patients.
Other Studies Directly Implicate the Mitochondria
Julia Newton's group at Newcastle University found reduced mitochondria function [6] in both severely and moderately affected patients. Interestingly, they found "disease severity does not correlate with mitochondrial function and even those with a moderate form of the disease show evidence of mitochondrial dysfunction." This means the mitochondria function is more like a switch flipped for all patients than a gradient of effect or finding only in a subset. However, severely affected patients did have greater respiratory acidification due to impairments in glycolysis not seen in moderate ones. A straightforward interpretation would be impairment to mitochondrial function is a prerequisite for disease but that downstream effects of disease can impair vital cellular processes like glycolysis.
Another new study by Bhupesh Prusty of the University of Wurzburg, and UCSD’s Robert Naviaux has found that mitochondria from ME patients show dramatic fragmentation in comparison to controls [7][8].
In an experiment with culture cells with latent HHV-6 (containing Human Herpesvirus 6 DNA–but not actual virus particles) chemical reactivation of HHV-6 resulted in the production of several viral RNAs but not major viral proteins. Significantly, Prusty and Naviaux found HHV-6 reactivation induced mitochondrial fragmentation, oxidative changes, and decreased antiviral resistance. When fluid from the cell culture of the HHV-6 reactivated cells was transferred to a new group of cells (not exposed to HHV-6), mitochondrial fragmentation and oxidative changes also occurred in these cells but with increased antiviral resistance! [8]
The last experiment involved transferring not HHV-6 infected cell culture fluid but rather blood serum from ME patients to new cells. This serum transfer induced an identical state of mitochondrial fragmentation, oxidative change, and antiviral resistance! These experiments show that one or more molecule types induced by HHV-6 reactivation are secreted to the outer fluid and can function to induce mitochondrial fragmentation, oxidative changes, and antiviral properties in distant cells. Not only that, but the serum of ME patients acts in exactly this manner (suggesting we have a molecular factor(s) in our blood similar, or the same as, that secreted by the HHV-6 reactivated cells–and which is causing harmful changes to our mitochondria).
A common thread to mitochondrial findings by both Davis and Prusty is the presence of a serum factor, or factors, which could be transferred to the cells of healthy people and inflict the ME cells’ phenotype on well cells. How far this commonality extends (for instance whether serum factor(s) found in Davis's impedance study is the same as the factor(s) found in Prusty's study of mitochondrial fragmentation) is currently unknown.
There are two main implications:
Some of the most precocious intra-cellular findings stem from the finding of an abnormal, cleaved, 37 kiloDalton RNase L and dramatic reduction in actin in patients’ cells by the late Robert Suhadolnik [9]. In “Chronic Fatigue Syndrome: a biological approach” [10], by Kenny De Meirleir and colleagues, these findings are expanded into a panoply of intra-cellular dysregulation including defective activation of RNase L by 2-5-A dimers produced by 2-5’A oligoadenylate synthetase, cleavage of Rnase L by m-calpain, and abnormalities in the cell state reminiscent of incompletely induced apoptosis (an essential cell disposal process culminating in cell death). Given the role of mitochondria in both cellular energy and apoptosis, it is hoped that the mitochondrial fragmentation research and antiviral induction research can explain the significance of these findings in a panoramic manner.
One indicator of scientific progress is the ability to place important observations in a single theoretical framework. The findings of induction of mitochondrial fragmentation and a cellular viral resistance state by patient serum could explain one such finding: the impairment of pyruvate dehydrogenase found by Fluge and Mella of Haukeland University, Norway. Prusty’s findings indicated that the mitochondrial fragmentation (caused by both patient serum and HHV-6 infected cell supernatant) potently impaired this very complex!
However starved our own mitochondria may be, this is a very exciting time for mitochondria research in ME and we must ensure these researchers are not starved of funding!
Other Studies Directly Implicate the Mitochondria
Julia Newton's group at Newcastle University found reduced mitochondria function [6] in both severely and moderately affected patients. Interestingly, they found "disease severity does not correlate with mitochondrial function and even those with a moderate form of the disease show evidence of mitochondrial dysfunction." This means the mitochondria function is more like a switch flipped for all patients than a gradient of effect or finding only in a subset. However, severely affected patients did have greater respiratory acidification due to impairments in glycolysis not seen in moderate ones. A straightforward interpretation would be impairment to mitochondrial function is a prerequisite for disease but that downstream effects of disease can impair vital cellular processes like glycolysis.
Another new study by Bhupesh Prusty of the University of Wurzburg, and UCSD’s Robert Naviaux has found that mitochondria from ME patients show dramatic fragmentation in comparison to controls [7][8].
In an experiment with culture cells with latent HHV-6 (containing Human Herpesvirus 6 DNA–but not actual virus particles) chemical reactivation of HHV-6 resulted in the production of several viral RNAs but not major viral proteins. Significantly, Prusty and Naviaux found HHV-6 reactivation induced mitochondrial fragmentation, oxidative changes, and decreased antiviral resistance. When fluid from the cell culture of the HHV-6 reactivated cells was transferred to a new group of cells (not exposed to HHV-6), mitochondrial fragmentation and oxidative changes also occurred in these cells but with increased antiviral resistance! [8]
The last experiment involved transferring not HHV-6 infected cell culture fluid but rather blood serum from ME patients to new cells. This serum transfer induced an identical state of mitochondrial fragmentation, oxidative change, and antiviral resistance! These experiments show that one or more molecule types induced by HHV-6 reactivation are secreted to the outer fluid and can function to induce mitochondrial fragmentation, oxidative changes, and antiviral properties in distant cells. Not only that, but the serum of ME patients acts in exactly this manner (suggesting we have a molecular factor(s) in our blood similar, or the same as, that secreted by the HHV-6 reactivated cells–and which is causing harmful changes to our mitochondria).
A common thread to mitochondrial findings by both Davis and Prusty is the presence of a serum factor, or factors, which could be transferred to the cells of healthy people and inflict the ME cells’ phenotype on well cells. How far this commonality extends (for instance whether serum factor(s) found in Davis's impedance study is the same as the factor(s) found in Prusty's study of mitochondrial fragmentation) is currently unknown.
There are two main implications:
- As a blood serum factor, or factors, is sufficient to induce a damaged, low-energy state this state may be reversible if this factor–or its causes–can be blocked or removed from the organism.
- As widespread mitochondrial fragmentation is sufficient to cause a body-wide low energy state, using the principle of only invoking needed changes (Parsimony Principle) it makes sense to assume this fragmentation, and cellular-energetic loss, is part of the core disease mechanism in ME.
Some of the most precocious intra-cellular findings stem from the finding of an abnormal, cleaved, 37 kiloDalton RNase L and dramatic reduction in actin in patients’ cells by the late Robert Suhadolnik [9]. In “Chronic Fatigue Syndrome: a biological approach” [10], by Kenny De Meirleir and colleagues, these findings are expanded into a panoply of intra-cellular dysregulation including defective activation of RNase L by 2-5-A dimers produced by 2-5’A oligoadenylate synthetase, cleavage of Rnase L by m-calpain, and abnormalities in the cell state reminiscent of incompletely induced apoptosis (an essential cell disposal process culminating in cell death). Given the role of mitochondria in both cellular energy and apoptosis, it is hoped that the mitochondrial fragmentation research and antiviral induction research can explain the significance of these findings in a panoramic manner.
One indicator of scientific progress is the ability to place important observations in a single theoretical framework. The findings of induction of mitochondrial fragmentation and a cellular viral resistance state by patient serum could explain one such finding: the impairment of pyruvate dehydrogenase found by Fluge and Mella of Haukeland University, Norway. Prusty’s findings indicated that the mitochondrial fragmentation (caused by both patient serum and HHV-6 infected cell supernatant) potently impaired this very complex!
However starved our own mitochondria may be, this is a very exciting time for mitochondria research in ME and we must ensure these researchers are not starved of funding!
REFERENCES:
1.) Bowles NE, Bayston TA, Zhang HY, Doyle D, Lane RJ, Cunningham L, Archard LC. Persistence of enterovirus RNA in muscle biopsy samples suggests that some cases of chronic fatigue syndrome result from a previous, inflammatory viral myopathy. J Med. 1993;24(2-3):145-60. PubMed PMID: 8409778.
2.) Vecchiet L, Montanari G, Pizzigallo E, Iezzi S, de Bigontina P, Dragani L, Vecchiet J, Giamberardino MA. Sensory characterization of somatic parietal tissues in humans with chronic fatigue syndrome. Neurosci Lett. 1996 Apr 19;208(2):117-20. PubMed PMID: 8859904.
3.) Chunfang Zhang, Alessandra Baumer, Ian R. Mackay, Anthony W. Linnane, Phillip Nagley, Unusual pattern of mitochondrial DNA deletions in skeletal muscle of an adult human with chronic fatigue syndrome, Human Molecular Genetics, Volume 4, Issue 4, April 1995, Pages 751–754
4.) Behan WM, More IA, Behan PO. Mitochondrial abnormalities in the postviral fatigue syndrome. Acta Neuropathol. 1991;83(1):61-5. PubMed PMID: 1792865.
5.) Esfandyarpour R, Kashi A, Nemat-Gorgani M, Wilhelmy J, Davis RW. A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Proc Natl Acad Sci U S A. 2019 May 21;116(21):10250-10257. doi: 10.1073/pnas.1901274116. Epub 2019 Apr 29. PubMed PMID: 31036648; PubMed Central PMCID: PMC6535016.
6.) Tomas C, Elson JL, Strassheim V, Newton JL, Walker M. The effect of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) severity on cellular bioenergetic function. PLoS One. 2020 Apr 10;15(4):e0231136. doi: 10.1371/journal.pone.0231136. eCollection 2020. PubMed PMID: 32275686; PubMed Central PMCID: PMC7147788.
7.) https://www.youtube.com/watch?v=yh53AnVNQqw
https://twitter.com/BhupeshPrusty/status/1233508017368436737/photo/1
8.) Schreiner P, Harrer T, Scheibenbogen C, Lamer S, Schlosser A, Naviaux RK and Prusty BK. Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, and the Coordination of Antiviral and Metabolic Phenotypes in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. ImmunoHorizons April 1, 2020, 4 (4) 201-215; DOI
9.) Suhadolnik, RJ. Dysregulated 2-5 Synthetase/Rnase L/Pkr Pathways in Cfs. NIH Grantome. 1997.
10.) DeMeirleir, K. & Englebienne, P. Chronic fatigue syndrome: a biological approach. (CRC Press, 2002).
Media:
Image Source (used with permission): https://twitter.com/BhupeshPrusty/status/1233508017368436737/photo/1
1.) Bowles NE, Bayston TA, Zhang HY, Doyle D, Lane RJ, Cunningham L, Archard LC. Persistence of enterovirus RNA in muscle biopsy samples suggests that some cases of chronic fatigue syndrome result from a previous, inflammatory viral myopathy. J Med. 1993;24(2-3):145-60. PubMed PMID: 8409778.
2.) Vecchiet L, Montanari G, Pizzigallo E, Iezzi S, de Bigontina P, Dragani L, Vecchiet J, Giamberardino MA. Sensory characterization of somatic parietal tissues in humans with chronic fatigue syndrome. Neurosci Lett. 1996 Apr 19;208(2):117-20. PubMed PMID: 8859904.
3.) Chunfang Zhang, Alessandra Baumer, Ian R. Mackay, Anthony W. Linnane, Phillip Nagley, Unusual pattern of mitochondrial DNA deletions in skeletal muscle of an adult human with chronic fatigue syndrome, Human Molecular Genetics, Volume 4, Issue 4, April 1995, Pages 751–754
4.) Behan WM, More IA, Behan PO. Mitochondrial abnormalities in the postviral fatigue syndrome. Acta Neuropathol. 1991;83(1):61-5. PubMed PMID: 1792865.
5.) Esfandyarpour R, Kashi A, Nemat-Gorgani M, Wilhelmy J, Davis RW. A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Proc Natl Acad Sci U S A. 2019 May 21;116(21):10250-10257. doi: 10.1073/pnas.1901274116. Epub 2019 Apr 29. PubMed PMID: 31036648; PubMed Central PMCID: PMC6535016.
6.) Tomas C, Elson JL, Strassheim V, Newton JL, Walker M. The effect of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) severity on cellular bioenergetic function. PLoS One. 2020 Apr 10;15(4):e0231136. doi: 10.1371/journal.pone.0231136. eCollection 2020. PubMed PMID: 32275686; PubMed Central PMCID: PMC7147788.
7.) https://www.youtube.com/watch?v=yh53AnVNQqw
https://twitter.com/BhupeshPrusty/status/1233508017368436737/photo/1
8.) Schreiner P, Harrer T, Scheibenbogen C, Lamer S, Schlosser A, Naviaux RK and Prusty BK. Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, and the Coordination of Antiviral and Metabolic Phenotypes in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. ImmunoHorizons April 1, 2020, 4 (4) 201-215; DOI
9.) Suhadolnik, RJ. Dysregulated 2-5 Synthetase/Rnase L/Pkr Pathways in Cfs. NIH Grantome. 1997.
10.) DeMeirleir, K. & Englebienne, P. Chronic fatigue syndrome: a biological approach. (CRC Press, 2002).
Media:
Image Source (used with permission): https://twitter.com/BhupeshPrusty/status/1233508017368436737/photo/1
Guest blog by: Joan McParland, Founder & Voluntary Coordinator
Hope 4 ME & Fibro Northern Ireland
Since a novel virus turned the entire world upside down, this needs to be said for others to understand the predicament #ME patients now find themselves in.
The world sees a shocking Covid-19 nightmare scenario, WE see a mirror image of #ME.
In the parallel world of the healthy...
BUT
This is NOT what happens when somebody gets #ME nor even when an estimated 17 million people around the globe, have #ME.
We are watching in both amazement and horror, as reports are now appearing of possible permanent post-viral damage in Covid-19 patients. Will they too be subjected to disbelief when they don’t recover quickly enough, or never recover. Will they be ’exercised’ into an even worse state, or sent to cognitive behavioral therapists because the viral load has disappeared and routine blood tests are ‘normal’?
Will the money tree run out and they’ll have to pay for biomedical research? Will they become invisible or airbrushed away, just like those discovered to have been overlooked in care homes during the current pandemic.
Will we be validated with all the new biomedical research into post-viral fatigue states, only time will tell and we are well accustomed to waiting, for decades.
THIS is why we have to scrutinize and question healthcare more closely than most, it’s a response to the decades of gas-lighting, neglect, abuse, indifference and the fact we’ve been left to rot, due to the influences of a very powerful U.K. psychiatric lobby.
This is WAY much bigger and probably way outside the understanding of anyone who hasn’t experienced the losses above.
See information HERE about the PACE trial and the role of the UK psychiatric lobby: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/?fbclid=IwAR2Ut45sURbVhB0qHDjvrRGzSFXlhISW89F72UK50CXv7GiWopy0Mp_VcV0
The world sees a shocking Covid-19 nightmare scenario, WE see a mirror image of #ME.
In the parallel world of the healthy...
- This Covid-19 pandemic brought life as we knew it to an abrupt halt...
this is what happens when someone gets #ME - This Covid-19 pandemic took careers, social lives, family lives away...
this is what happens when someone gets #ME - This Covid-19 pandemic brought an end to travel and exotic holidays...
this is what happens when someone gets #ME - This Covid-19 pandemic brought self-isolation, and being trapped in homes...
this is what happens when someone gets #ME - This Covid-19 pandemic brought fear of the unknown, an invisible invader...
this is what happens when someone gets #ME - This Covid-19 pandemic does not have effective treatment, or a cure...
this is what happens when someone gets #ME - This Covid-19 pandemic brings a possibility of death and emerging signs of chronic illness...
this is what happens when someone gets #ME - This Covid-19 pandemic brought an inadequate NHS service to light...
this is what happens when someone gets #ME - This Covid-19 pandemic does not discriminate by age, race, financial status, political or sexual persuasion...
this is what happens when someone gets #ME - This Covid-19 pandemic brought sudden shock and horror and will result in post traumatic stress...
this is what happens when someone gets #ME - This Covid-19 pandemic revealed a hell nobody knew existed...
this is what happens when someone gets #ME - This Covid-19 pandemic brings financial ruin and the need to exist on social security benefits...
this is what happens when someone gets #ME - This Covid-19 pandemic will bring increased suicide rates due to mental and/or physical suffering...
this is what happens when someone gets #ME
BUT
This is NOT what happens when somebody gets #ME nor even when an estimated 17 million people around the globe, have #ME.
We are watching in both amazement and horror, as reports are now appearing of possible permanent post-viral damage in Covid-19 patients. Will they too be subjected to disbelief when they don’t recover quickly enough, or never recover. Will they be ’exercised’ into an even worse state, or sent to cognitive behavioral therapists because the viral load has disappeared and routine blood tests are ‘normal’?
Will the money tree run out and they’ll have to pay for biomedical research? Will they become invisible or airbrushed away, just like those discovered to have been overlooked in care homes during the current pandemic.
Will we be validated with all the new biomedical research into post-viral fatigue states, only time will tell and we are well accustomed to waiting, for decades.
THIS is why we have to scrutinize and question healthcare more closely than most, it’s a response to the decades of gas-lighting, neglect, abuse, indifference and the fact we’ve been left to rot, due to the influences of a very powerful U.K. psychiatric lobby.
This is WAY much bigger and probably way outside the understanding of anyone who hasn’t experienced the losses above.
See information HERE about the PACE trial and the role of the UK psychiatric lobby: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/?fbclid=IwAR2Ut45sURbVhB0qHDjvrRGzSFXlhISW89F72UK50CXv7GiWopy0Mp_VcV0
#MyalgicE #MyalgicEncephalomyelitis #PwME #MEICC #MEIntl #SevereME #PwME4ICC
(Note: NEW! information is put at the top of this blog, and will later be moved to its subject matter location.)
UPDATED 02/18/21 - People with Myalgic Encephalomyelitis (#pwME) are experienced at dealing with a dysfunctional immune system, which includes social distancing and avoiding viral infections. We could teach the world a thing or two about how it's done ... if only they'd listen. We will try to update this blog as additional information comes to light.
NEW INFORMATION:
02/18 - from CovidActNow - Hydrating the Respiratory Tract: An Alternative Explanation Why Masks Lower Severity of COVID-19 by Courtney - 02 Feb 2021 - "A study demonstrates how using masks, including cloth masks, increases the humidity of the air that a person inhales. Mask wearing promotes hydration of the respiratory tract, which increases the respiratory track’s general immune defense against infections and prevents viruses from reaching the lower respiratory tract. The researchers suggest that this change might be one of the ways that even wearing cloth masks decreases our chances of getting COVID."
02/17 - from CovidActNow - Internet search patterns reveal clinical course of COVID-19 disease progression and pandemic spread across 32 countries by Lu & Reis (USA) - 11 Feb 2021 - "A study analyzed internet search trends related to COVID across 32 countries, finding that increases in COVID symptom-related searches preceded increases in reported COVID cases and deaths by an average of 18.5 and 22 days, respectively. Using the pattern of search terms, the timing of the appearance of COVID symptom was determined to be fever, dry cough, sore throat, and chills, first, followed by shortness of breath about five days afterwards. This result correlates with the clinical course of COVID as described in the medical literature. The study shows that internet searches can be used for real-time tracking of COVID and other infectious diseases at a population scale."
12/27 - Dr. Hillman of Huntersville, NC answers "Should I take the COVID-19 vaccine when it becomes available?" (pertaining to CFS and FM patients).
12/23 - HERE are some mask tips from AARP for: how to fit and wear your mask, what materials are best, and mistakes to avoid.
12/20 - ME patients are known to have Blood-Brain Barrier issues. Results from this recent study: “… show that intravenously injected radioiodinated S1 (I-S1) readily crossed the blood–brain barrier in male mice, was taken up by brain regions and entered the parenchymal brain space. I-S1 was also taken up by the lung, spleen, kidney and liver. Intranasally administered I-S1 also entered the brain, although at levels roughly ten times lower than after intravenous administration.” So WEAR YOUR MASK!!
12/15 - HERE's a FACT SHEET FOR RECIPIENTS AND CAREGIVERS from Pfizer regarding their BIONTECH Covid-19 vaccine. Please make note of the warnings included for those with allergies & immune system issues, and that what you should tell your vaccination provider.
12/15 - Re: Long covid: doctors must assess and investigate patients properly by Nina Muirhead (09 December 2020) - A response to the original article by Lokugamage, Bowen and Blair, regarding the link between post-COVID patients and those having ME. "Long COVID and ME/CFS are complex and heterogeneous. Both need greater recognition and research. The worst outcome would be to ignore or dismiss both. There is a pressing need for better education so that we can take the right approach and avoid causing patients harm."
11/28 - New/updated info is shown under "Signs and Symptoms" below. A good graphic of "Where COVID Goes" can be found HERE.
11/28 - Attack on Red Blood Cells a Prime Suspect in COVID’s Debilitating Effects
by Chris Casey (17 November 2020) - The lingering oxygen-level difficulties are explained by the lifespan of red blood cells. The cells circulate for up to 120 days before the body replaces them. To make room for hemoglobin, red blood cells have evolved to lose nuclei and organelles that allow other cells to replace damaged molecular components. So if the virus damages red blood cells, it will be up to four months before they are cleared and replaced with cells that do not carry such damage.
10/10 - Coronavirus and the brain: Diagnosing and treating COVID-19's neurological effects by John F. Connolly (23 July 20) - "COVID-19’s “neuro-invasive” features are leading to calls to prepare for the consequences of the daunting relationship between COVID-19 and neurologic pathologies. As more patients recover, we need to continue to monitor them as they return to their everyday lives. Are they functioning as they did before they caught the virus? Or are they experiencing difficulties returning to work, with complications concentrating or maintaining focus?"
8/29 - Effect of Calcifediol Treatment and best Available Therapy versus best Available Therapy on Intensive Care Unit Admission and Mortality Among Patients Hospitalized for COVID-19: A Pilot Randomized Clinical study by Castillo, Costa, Barrios, Díaz, Miranda, Bouillon and Gomez (Spain, Belgium) - "The vitamin D endocrine system may have a variety of actions on cells and tissues involved in COVID-19 progression."
8/19 -Dr. Monica Gandhi on Why Wearing a Mask is Crucial for Containing COVID - "Dr. Monica Gandhi (MD, MPH University of California San Francisco) breaks down how mask usage has contributed to both reducing the infection rate and severity of COVID through a series of examples, and discusses what you can do to help mitigate the impact of the pandemic in your community." ~ COVID Act Now
7/3 - HERE's a PDF update (7/2/20) from Covid ActNow. The interactive map and daily updates can be found HERE. Signup for their email at covidactnow.org/alert_signup.
COVID Act Now is a multidisciplinary team of technologists, epidemiologists, health experts, and public policy leaders working to provide disease intelligence and data analysis on COVID in the U.S. Partnering with Georgetown University and Stanford Medicine; click HERE to enter your state to see its current progress. (6/16/20)
DIVERSIONS, HUMOR, AND ME WRITINGS
Before we start, HERE is a pdf with Diversions, Humor, and ME Writings. The link/document for Things-To-Do has been moved into this pdf. If you have additional suggestions, please send them to David.Steckel@ME-International.org.
6/2 - Here's a link for Museums that offer virtual tours. Hours of intellectual browsing!
SIGNS & SYMPTOMS
We have learned a lot since our original post on 20 Feb 2020. In addition to the usual symptoms, new unusual symptoms are showing up. See this AAPP article titled "Unusual Symptoms of COVID-19 You Need to Know About". These are listed above the typical signs and symptoms for Coronavirus include (from the Report of the WHO-China Joint Mission on Coronavirus Disease 2019 (COVID-19) 20 Feb 2020):
11/28 - New/updated info is shown, with a good graphic of "Where COVID Goes" can be found HERE.
9/01 - A Supercomputer Analyzed Covid-19 - and an Interesting New Theory Has Emerged by Thomas Smith. "The [bradykinin] hypothesis provides a model that explains many aspects of Covid-19, including some of its most bizarre symptoms. It also suggests 10-plus potential treatments, many of which are already FDA approved." There are also Bradykinin connections related to ME (the regulation of blood pressure and a breakdown of the blood-brain barrier). ~ MEI
7/9 -NBC News reports WHO acknowledges 'emerging evidence' of airborne spread of COVID-19. The agency said it will release a scientific brief on all modes of transmission in the coming days. With additional information HERE. There's a growing consensus that tiny viral particles can spread through singing, speaking loudly, or breathing heavily, in addition to respiratory droplets, usually from sneezes or coughs.
CONTAMINATION
Virus can live on objects for various periods of time. How to clean these surfaces can be found in THIS BBC ARTICLE (3/17/20). An article from the Journal of Hospital Infection titled "Persistence of coronaviruses on inanimate surfaces and their inactivation with biocidal agents" has a pretty comprehensive table of different surfaces and times. (March 2020)
GETTING TESTED
The current parameters for getting a COVID-19 test often include fever. As ME includes a dysfunctional immune system, many pwME have a lower than normal base temperature and may not exhibit a fever when ill. Doctors may be more willing to recognize a fever if there is a baseline record of lower than average temperature. The following information may be helpful to share with medical professionals if testing is denied due to lack of fever.
Patients may want to have a copy of the following on hand:
1. The IC Primer can help doctors understand the unique biological abnormalities of ME.
2. Dr. Weir and Dr. Speight of the 25% M.E. Group put out a notification (download) regarding severe ME patients and Coronavirus. "PWME should be aware of the fact that they sometimes do not develop a fever when they acquire a virus infection."
3. Emergency Room Info for People with ME - This document contains information compiled from patient input and expert documents to assist patients and caregivers in communicating with medical professionals.
More info on lack of fever:
SANITIZING
Use bleach or 70%+ alcohol to kill virus on surfaces. A recipe for a 1:10 bleach spray solution is provided by VeryWellHealth.com as: "1 part bleach for every 9 parts water. A good amount to start with is 1/4 cup bleach and 2¼ cups of water. Carefully pour the bleach into the spray bottle or jar first, then add the water. Mixing the solution in this order will prevent the bleach from splashing up on you." (1/5/20) NOTE: It may be safer to add bleach to the water, even though bleach is basic and not acidic. (Thank you M.R.)
NOTE: A bleach solution can lose its potency over a couple of days. HERE's an informative blog from Clorox discussing this. (7/4/20)
Recipes for hand sanitizers can be found on the web. Ingredients may include isopropol or rubbing alcohol (or very high proof drinking alcohol like Everclear), aloe vera gel or xanthan gum for thickening, and essential oils or lemon juice for fragrance. Be sure to follow the recipe closely, as too little [alcohol] can make it ineffective and too much can dry out your hands. Best advice is to WASH YOUR HANDS and AVOID TOUCHING YOUR FACE.
These Common Household Products Can Destroy the Novel Virus by Consumer Reports shows you how to use them and which products to stay away from. (03/17/20)
WHAT YOU CAN DO
For personalized management and treatment information for ME, see the ME IC Primer starting on pg#13.
12/23 - HERE are some mask tips from AARP for: how to fit and wear your mask, what materials are best, and mistakes to avoid.
6/17 - Medical News Today's article Best available evidence supports physical distancing and wearing face masks "Until randomized controlled trials are conducted and can offer a greater degree of certainty, this study, which appears in The Lancet, provides doctors and policymakers with interim information on which to base key decisions." (6/4/20)
What I Learned From Nursing My Husband Through COVID-19 by Martha Campbell - This article discusses what was done at home to help minimize COVID-19 effects at home, as practiced by a couple who are medical professionals. (4/19/20)
Consider using acetaminophen (TYLENOL®) / paracetamol (EU) instead of ibuprofen. Read THIS from MastCellDisease.com. "Ian Jones, a professor of virology at the University of Reading, said that ibuprofen’s anti-inflammatory properties could “dampen down” the immune system, which could slow the recovery process."
HERE's a breathing exercise to enhance ventilation of the lungs in case of sickness or to prepare beforehand. Short summary:
5× breathe in deeply, hold, breathe out, then 1 strong cough
Repeat this cycle 2× , then breathe for 10 minutes laying on stomach/pillow to free up most of the lungs.
Review this 25% M.E. Group's notification (as a download from https://25megroup.org/download/1796/?v=3236) for guidance
Dr. Nancy Klimas talks about Coronavirus & ME/CFS (14:02 - 03/13/20)
Dr. Sarah Myhill advises on Treating Viral Infections (5:21 - 03/12/20)
See dosage info HERE and HERE.
PRACTICAL LINKS:
CARE GIVERS:
Care Alliance Ireland - Creating a Backup Plan: Covid-19 and Family Carers
6/13 - From AARP ...What to Do If You Have Coronavirus and No Caregiver to Help Experts provide tips on where to turn in a caregiving emergency (with a link for Spanish translation).
PUBLIC SUPPORT / MUTUAL AID GROUPS:
AARP - Find a Mutual Aid Group - "We have aggregated these mutual aid groups as a public resource. Because these groups are formed in local communities, we cannot verify or vouch for any group or individual offerings. Please exercise all necessary judgment when interacting with community members not previously known to you."
Collective Care Is Our Best Best Weapon Against COVID-19 - This is a "...growing list of mutual aid pandemic disaster care, in alphabetical order ..." compiled by Cindy Milstein for the US, Canada, Britain and Germany that is said to be updated daily as additional info is collected.
UK - FreedomNews.org - A long list of mutual aid groups throughout the country. "We have done our best to include all already existing mutual aid groups below. If your group is not listed, or you set one up after this text’s publication, please get in touch and we will fix it. You can reach us either via our Facebook page, or send an email to editor@freedompress.org.uk.
U.S. - Seattle, WA - Office of the Mayor
U.S. - Nextdoor - Nextdoor is an app to connect neighbors. "Every neighbor must verify their address in the neighborhood. Every neighbor must use their real name. Nextdoor is securely encrypted using the HTTPS Internet protocol."
The North Carolina Dept. of HHS has established a website and a COVID-19 hotline. Check to see if your state has done the same. Your county may also be providing this service. The National Governors Association has "Current Information On The Status Of COVID-19 In The United States And Abroad, What Actions States/Territories Have Taken To Address It, And The Latest Efforts By The Federal Government" HERE.
OTHER INFORMATION:
During this time, your PC may also be under attack - more than normal. We will be adding to a link-list in THIS DOCUMENT to give you ways in which to help protect your IT world. These lessons are good to learn even after the current onslaught of hackers, etc. is diminished.
Covid-19 Stats:
Worldwide and by Country by Worldometer (updated daily)
HERE is a link to a document, last updated 15 July 2020, from the London Business School on the "economics of a pandemic". Chapters of interest include science, health policies, economics, and macroeconomic policies.
NEW INFORMATION:
02/18 - from CovidActNow - Hydrating the Respiratory Tract: An Alternative Explanation Why Masks Lower Severity of COVID-19 by Courtney - 02 Feb 2021 - "A study demonstrates how using masks, including cloth masks, increases the humidity of the air that a person inhales. Mask wearing promotes hydration of the respiratory tract, which increases the respiratory track’s general immune defense against infections and prevents viruses from reaching the lower respiratory tract. The researchers suggest that this change might be one of the ways that even wearing cloth masks decreases our chances of getting COVID."
02/17 - from CovidActNow - Internet search patterns reveal clinical course of COVID-19 disease progression and pandemic spread across 32 countries by Lu & Reis (USA) - 11 Feb 2021 - "A study analyzed internet search trends related to COVID across 32 countries, finding that increases in COVID symptom-related searches preceded increases in reported COVID cases and deaths by an average of 18.5 and 22 days, respectively. Using the pattern of search terms, the timing of the appearance of COVID symptom was determined to be fever, dry cough, sore throat, and chills, first, followed by shortness of breath about five days afterwards. This result correlates with the clinical course of COVID as described in the medical literature. The study shows that internet searches can be used for real-time tracking of COVID and other infectious diseases at a population scale."
12/27 - Dr. Hillman of Huntersville, NC answers "Should I take the COVID-19 vaccine when it becomes available?" (pertaining to CFS and FM patients).
12/23 - HERE are some mask tips from AARP for: how to fit and wear your mask, what materials are best, and mistakes to avoid.
12/20 - ME patients are known to have Blood-Brain Barrier issues. Results from this recent study: “… show that intravenously injected radioiodinated S1 (I-S1) readily crossed the blood–brain barrier in male mice, was taken up by brain regions and entered the parenchymal brain space. I-S1 was also taken up by the lung, spleen, kidney and liver. Intranasally administered I-S1 also entered the brain, although at levels roughly ten times lower than after intravenous administration.” So WEAR YOUR MASK!!
12/15 - HERE's a FACT SHEET FOR RECIPIENTS AND CAREGIVERS from Pfizer regarding their BIONTECH Covid-19 vaccine. Please make note of the warnings included for those with allergies & immune system issues, and that what you should tell your vaccination provider.
12/15 - Re: Long covid: doctors must assess and investigate patients properly by Nina Muirhead (09 December 2020) - A response to the original article by Lokugamage, Bowen and Blair, regarding the link between post-COVID patients and those having ME. "Long COVID and ME/CFS are complex and heterogeneous. Both need greater recognition and research. The worst outcome would be to ignore or dismiss both. There is a pressing need for better education so that we can take the right approach and avoid causing patients harm."
11/28 - New/updated info is shown under "Signs and Symptoms" below. A good graphic of "Where COVID Goes" can be found HERE.
11/28 - Attack on Red Blood Cells a Prime Suspect in COVID’s Debilitating Effects
by Chris Casey (17 November 2020) - The lingering oxygen-level difficulties are explained by the lifespan of red blood cells. The cells circulate for up to 120 days before the body replaces them. To make room for hemoglobin, red blood cells have evolved to lose nuclei and organelles that allow other cells to replace damaged molecular components. So if the virus damages red blood cells, it will be up to four months before they are cleared and replaced with cells that do not carry such damage.
10/10 - Coronavirus and the brain: Diagnosing and treating COVID-19's neurological effects by John F. Connolly (23 July 20) - "COVID-19’s “neuro-invasive” features are leading to calls to prepare for the consequences of the daunting relationship between COVID-19 and neurologic pathologies. As more patients recover, we need to continue to monitor them as they return to their everyday lives. Are they functioning as they did before they caught the virus? Or are they experiencing difficulties returning to work, with complications concentrating or maintaining focus?"
8/29 - Effect of Calcifediol Treatment and best Available Therapy versus best Available Therapy on Intensive Care Unit Admission and Mortality Among Patients Hospitalized for COVID-19: A Pilot Randomized Clinical study by Castillo, Costa, Barrios, Díaz, Miranda, Bouillon and Gomez (Spain, Belgium) - "The vitamin D endocrine system may have a variety of actions on cells and tissues involved in COVID-19 progression."
8/19 -Dr. Monica Gandhi on Why Wearing a Mask is Crucial for Containing COVID - "Dr. Monica Gandhi (MD, MPH University of California San Francisco) breaks down how mask usage has contributed to both reducing the infection rate and severity of COVID through a series of examples, and discusses what you can do to help mitigate the impact of the pandemic in your community." ~ COVID Act Now
7/3 - HERE's a PDF update (7/2/20) from Covid ActNow. The interactive map and daily updates can be found HERE. Signup for their email at covidactnow.org/alert_signup.
COVID Act Now is a multidisciplinary team of technologists, epidemiologists, health experts, and public policy leaders working to provide disease intelligence and data analysis on COVID in the U.S. Partnering with Georgetown University and Stanford Medicine; click HERE to enter your state to see its current progress. (6/16/20)
DIVERSIONS, HUMOR, AND ME WRITINGS
Before we start, HERE is a pdf with Diversions, Humor, and ME Writings. The link/document for Things-To-Do has been moved into this pdf. If you have additional suggestions, please send them to David.Steckel@ME-International.org.
6/2 - Here's a link for Museums that offer virtual tours. Hours of intellectual browsing!
SIGNS & SYMPTOMS
We have learned a lot since our original post on 20 Feb 2020. In addition to the usual symptoms, new unusual symptoms are showing up. See this AAPP article titled "Unusual Symptoms of COVID-19 You Need to Know About". These are listed above the typical signs and symptoms for Coronavirus include (from the Report of the WHO-China Joint Mission on Coronavirus Disease 2019 (COVID-19) 20 Feb 2020):
- COVID Toes - red or purple lesions/rashes on patients' hands and feet
- loss of taste or smell
- mild to severe hallucinations
- possible hearing loss
- fever, dry cough, fatigue, sputum production
- shortness of breath, sore throat, headache, dizzines, confusion
- Digestive symptoms - loss of appetite, diarrhea, nausea or vomiting, abdominal pain
- myalgia or arthralgia, chills
- nasal congestion, hemoptysis, conjunctival congestion
11/28 - New/updated info is shown, with a good graphic of "Where COVID Goes" can be found HERE.
9/01 - A Supercomputer Analyzed Covid-19 - and an Interesting New Theory Has Emerged by Thomas Smith. "The [bradykinin] hypothesis provides a model that explains many aspects of Covid-19, including some of its most bizarre symptoms. It also suggests 10-plus potential treatments, many of which are already FDA approved." There are also Bradykinin connections related to ME (the regulation of blood pressure and a breakdown of the blood-brain barrier). ~ MEI
7/9 -NBC News reports WHO acknowledges 'emerging evidence' of airborne spread of COVID-19. The agency said it will release a scientific brief on all modes of transmission in the coming days. With additional information HERE. There's a growing consensus that tiny viral particles can spread through singing, speaking loudly, or breathing heavily, in addition to respiratory droplets, usually from sneezes or coughs.
CONTAMINATION
Virus can live on objects for various periods of time. How to clean these surfaces can be found in THIS BBC ARTICLE (3/17/20). An article from the Journal of Hospital Infection titled "Persistence of coronaviruses on inanimate surfaces and their inactivation with biocidal agents" has a pretty comprehensive table of different surfaces and times. (March 2020)
- AIR: up to 3 hours
- COPPER: up to 4 hours
- CARDBOARD: up to 24 hours (setting aside mail for a day makes sense)
- PLASTIC/STAINLESS STEEL: up to 2-3 days
GETTING TESTED
The current parameters for getting a COVID-19 test often include fever. As ME includes a dysfunctional immune system, many pwME have a lower than normal base temperature and may not exhibit a fever when ill. Doctors may be more willing to recognize a fever if there is a baseline record of lower than average temperature. The following information may be helpful to share with medical professionals if testing is denied due to lack of fever.
Patients may want to have a copy of the following on hand:
1. The IC Primer can help doctors understand the unique biological abnormalities of ME.
- Loss of thermostatic stability: e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities. pg #8
- The initial infection may cause profound dysregulation of the immune system, which in turn may result in persistent infection or abnormal immune response. pg #5
2. Dr. Weir and Dr. Speight of the 25% M.E. Group put out a notification (download) regarding severe ME patients and Coronavirus. "PWME should be aware of the fact that they sometimes do not develop a fever when they acquire a virus infection."
3. Emergency Room Info for People with ME - This document contains information compiled from patient input and expert documents to assist patients and caregivers in communicating with medical professionals.
More info on lack of fever:
- Immune Deficiency Foundation COVID-19 Update - "..many individuals with a primary immunodeficiency (PI) report that they don’t run a fever even when they have contracted a serious viral infection."
- Cohen Children's Northwell Health Body Temperature in Patients with Primary Immunodeficiency (pdf download) - "67.7% reported absence of fever with infection"
SANITIZING
Use bleach or 70%+ alcohol to kill virus on surfaces. A recipe for a 1:10 bleach spray solution is provided by VeryWellHealth.com as: "1 part bleach for every 9 parts water. A good amount to start with is 1/4 cup bleach and 2¼ cups of water. Carefully pour the bleach into the spray bottle or jar first, then add the water. Mixing the solution in this order will prevent the bleach from splashing up on you." (1/5/20) NOTE: It may be safer to add bleach to the water, even though bleach is basic and not acidic. (Thank you M.R.)
NOTE: A bleach solution can lose its potency over a couple of days. HERE's an informative blog from Clorox discussing this. (7/4/20)
Recipes for hand sanitizers can be found on the web. Ingredients may include isopropol or rubbing alcohol (or very high proof drinking alcohol like Everclear), aloe vera gel or xanthan gum for thickening, and essential oils or lemon juice for fragrance. Be sure to follow the recipe closely, as too little [alcohol] can make it ineffective and too much can dry out your hands. Best advice is to WASH YOUR HANDS and AVOID TOUCHING YOUR FACE.
These Common Household Products Can Destroy the Novel Virus by Consumer Reports shows you how to use them and which products to stay away from. (03/17/20)
WHAT YOU CAN DO
For personalized management and treatment information for ME, see the ME IC Primer starting on pg#13.
12/23 - HERE are some mask tips from AARP for: how to fit and wear your mask, what materials are best, and mistakes to avoid.
6/17 - Medical News Today's article Best available evidence supports physical distancing and wearing face masks "Until randomized controlled trials are conducted and can offer a greater degree of certainty, this study, which appears in The Lancet, provides doctors and policymakers with interim information on which to base key decisions." (6/4/20)
What I Learned From Nursing My Husband Through COVID-19 by Martha Campbell - This article discusses what was done at home to help minimize COVID-19 effects at home, as practiced by a couple who are medical professionals. (4/19/20)
Consider using acetaminophen (TYLENOL®) / paracetamol (EU) instead of ibuprofen. Read THIS from MastCellDisease.com. "Ian Jones, a professor of virology at the University of Reading, said that ibuprofen’s anti-inflammatory properties could “dampen down” the immune system, which could slow the recovery process."
HERE's a breathing exercise to enhance ventilation of the lungs in case of sickness or to prepare beforehand. Short summary:
5× breathe in deeply, hold, breathe out, then 1 strong cough
Repeat this cycle 2× , then breathe for 10 minutes laying on stomach/pillow to free up most of the lungs.
Review this 25% M.E. Group's notification (as a download from https://25megroup.org/download/1796/?v=3236) for guidance
- Vitamin C
- Vitamin D
- Zinc
Dr. Nancy Klimas talks about Coronavirus & ME/CFS (14:02 - 03/13/20)
- 0:33 Risks of exposure
- 1:28 What you should do
- Wash hands, disinfect, social distancing etc.
- 2:30 Virus lifecycle
- 3:38 Products that may help prevent
- Xylitol based nasal spray (may be easier to find in the allergy aisle)
- Cellulose spray (Canada & Europe)
- 4:50 Asthmatics
- 6:45 Supplements (dosage and warnings in video)
- Vitamin C
- NAC (N Acetyl Cysteine)
- Co Q10 in the ubiquinol form
- Liposomal glutathione
- Carnitine
- Methyl B12
- Methyl Folate
- 9:34 Antivirals (dosage and warnings in video)
- Isoprinosine (U.S.)
- Immunovir (Canada & Europe)
- 11:55 Don't Panic
Dr. Sarah Myhill advises on Treating Viral Infections (5:21 - 03/12/20)
- Iodine with salt pipe
- Vitamin C
See dosage info HERE and HERE.
PRACTICAL LINKS:
- HowToGetOn - Newest News In the Time of Coronavirus Many useful links on many different subjects. [There's a link to the previously posted 50 State Guide to Unemployment & Paid Leave During Coronavirus within this site.]
- HowToGetOn - For those on Facebook there is a new page that will be posting information. Love & Discounts in the Time of Coronavirus - "A guide to food, money, and kindness during Coronavirus 2020."
CARE GIVERS:
Care Alliance Ireland - Creating a Backup Plan: Covid-19 and Family Carers
6/13 - From AARP ...What to Do If You Have Coronavirus and No Caregiver to Help Experts provide tips on where to turn in a caregiving emergency (with a link for Spanish translation).
PUBLIC SUPPORT / MUTUAL AID GROUPS:
AARP - Find a Mutual Aid Group - "We have aggregated these mutual aid groups as a public resource. Because these groups are formed in local communities, we cannot verify or vouch for any group or individual offerings. Please exercise all necessary judgment when interacting with community members not previously known to you."
Collective Care Is Our Best Best Weapon Against COVID-19 - This is a "...growing list of mutual aid pandemic disaster care, in alphabetical order ..." compiled by Cindy Milstein for the US, Canada, Britain and Germany that is said to be updated daily as additional info is collected.
UK - FreedomNews.org - A long list of mutual aid groups throughout the country. "We have done our best to include all already existing mutual aid groups below. If your group is not listed, or you set one up after this text’s publication, please get in touch and we will fix it. You can reach us either via our Facebook page, or send an email to editor@freedompress.org.uk.
U.S. - Seattle, WA - Office of the Mayor
U.S. - Nextdoor - Nextdoor is an app to connect neighbors. "Every neighbor must verify their address in the neighborhood. Every neighbor must use their real name. Nextdoor is securely encrypted using the HTTPS Internet protocol."
The North Carolina Dept. of HHS has established a website and a COVID-19 hotline. Check to see if your state has done the same. Your county may also be providing this service. The National Governors Association has "Current Information On The Status Of COVID-19 In The United States And Abroad, What Actions States/Territories Have Taken To Address It, And The Latest Efforts By The Federal Government" HERE.
OTHER INFORMATION:
- 5/17/20 - Coronavirus (COVID-19) and Gulf War Illness (15:24) is an audio link by Dr. Nancy Klimas. Since GWI is a Complex Immunological and Neurological Disease (CIND), the information given is pertinent to ME also. She highlights the importance of taking antioxidants (CoQ10 ubiquinol at 100mg (or ubiquinone at 300mg), NAC at 600mg 2x/day, Vitamin C at 500mg 2-3x/day, and Isoprinosine (dosage on bottle) 5 days/week), AND notes that if you cannot hold your breath for 10 seconds, it's time to go to the ER.
- What Antibody Studies Can Tell You — and More Importantly, What They Can’t by Caroline Chen (ProPublica) "... here’s a primer on what they do, how they should be properly wielded and how you, a critical reader (or journalist), can interpret a study that’s hot off the presses." (4/28/20)
- Why smart people believe coronavirus myths by the BBC. "...we are seeing a fresh inundation of fake news – this time around the coronavirus pandemic. From Facebook to WhatsApp, frequently shared misinformation include everything from what caused the outbreak to how you can prevent becoming ill." (4/6/20)
- Answers to your DIY face mask questions, including what material you should use by the Washington Post (4/9/20), AND a (download) link to the CDC instructions for making and using face masks. Even the ARMY has done testing and has recommendations for how to make an effective face mask.
5/25 - In addition to our previous information on DIY Face Masks from the Washington Post, CDC and ARMY, HERE is a good site on how to make masks from cloth, a T-shirt, a bandana, and denim from Happy DIY Home. It contains many helpful illustrations, making this endeavor very plausible. - N95 vs FFP3 & FFP2 Masks - What's the Difference? by Fast Life Hacks. A good tutorial on masks and respirators. (4/6/20)
- Dealing with OCD and Coronavirus by Spoonie Living (3/31/20)
- Health Impact News - A Scientific Look at Botanical Plants and Supplements Against Coronavirus (3/15/20)
- iHerb The Blog - Coronavirus, Precautions, and Strengthening the Immune System (1/29/20)
- Healthline - 15 Impressive Herbs with Antiviral Activity (10/21/19)
- UK.gov - Face-to-face health assessments for benefits suspended amid coronavirus outbreak (3/16/20)
- Coronavirus Disease 2019: Resources from the American Academy of Otolaryngology - Head and Neck Surgery. This covers topics like financial relief assistance, latest news from federal agencies, and more.
- Here's A Seattle Intensivist's One-Pager on COVID-19 pdf from Nick Mark, MD. Of course we all know what an intensivist is (a board-certified physician who provides special care for critically ill patients - I had to look it up). This one-pager is very technical, but still has good layman information within.
- That Discomfort You're Feeling is Grief - Harvard Business Review (3/23/20)
David Kessler, the world’s foremost expert on grief, shares his thoughts on why it’s important to acknowledge the grief you may be feeling, how to manage it, and how he believes we will find meaning in it. - Bateman Horne Center - Useful medical information when treating COVID-19 in patients with underlying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and severe fibromyalgia (FM) - While this information is focused on those who have ME/CFS and Fibromyalgia, some information also applies to ME. For general #MyalgicE treatment guidelines see the ME IC Primer starting on page 13.
During this time, your PC may also be under attack - more than normal. We will be adding to a link-list in THIS DOCUMENT to give you ways in which to help protect your IT world. These lessons are good to learn even after the current onslaught of hackers, etc. is diminished.
Covid-19 Stats:
Worldwide and by Country by Worldometer (updated daily)
HERE is a link to a document, last updated 15 July 2020, from the London Business School on the "economics of a pandemic". Chapters of interest include science, health policies, economics, and macroeconomic policies.
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