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Guest blog by Kayla Doyle.
My name is Kayla.
In all areas of my 32 year long life I have been a voice for the little people in every aspect of my life including my career. So here I am Writing for ME International.
When I first looked at the information on the website I thought “WOW. How informative.” But my simple brain-fogged brain went “ Yeah, I can not read that.” LOL!! Now I don't know if it's because I was a whirlwind student and paid absolutely no attention in school, or if it was a combination of brain fog and ADHD. So here I am putting some of this into council estate, Independent chronically ill and also winging life language.
Today I will be telling you all about one of the symptom groups you will find you have when living with ME.
The first thing I will be covering is the Neurocognitive symptoms you will have.
Literally what does that word even mean and why is it so big!!
Through a little research I've figured out it's brain stuff!
So with this brain stuff when having ME symptoms you will find that you...
Just adding in one more funny!! As I write this my spell check is absolutely positive that Neurocognitive is spelt wrong!! So haa!! If my computer can't spell it then how can we process it?!!
I really hope that at least one person found this helpful. If I made someone smile, that is an extra bonus.
I wish you all the luck in the world in your ME journey and if you ever need anyone to reach out to for support or a non judgemental conversation, then contact the ME International Board members and they will get you on the right track!!
I am also always happy to hear from an ME warrior. So if you would like to connect with me personally, then just ask!
Much Love and Stay Strong!!
Note: The list of neurocognitive impairments can be found on page 7 of the #MEICPrimer
Step 1 - read through new recipe.
Step 2 - forget what you read.
Step 3 - get everything out.
Step 4 - rest.
Step 5 - remember the recipe is for four pizzas which you know you can’t manage, so decide to cut the recipe in fourths.
Step 6 - do the math with ME New Math. You all know it.
Step 7 - measure it all out and cover the bowl, done for the day.
Are you still with me?
Step 8 - mid morning, next day, read the next step of the recipe and realize you weren’t supposed to put the salt in because you have to proof the yeast first. But the water is already in and the 15 minute timer started.
Step 9 - rest, a bit defeated.
Step 10 - have a brilliant idea. Make a half recipe instead of 1/4. Add mixed flour from bowl and realize you just added more salt again.
Step 11 - light bulb moment; make the whole thing. Now though not sure how much I added of anything. New math is beginning to fail me; like it was ever not failing me.
Step 12 - add more flour, sugar and yeast kind of guessing at the amount after subtracting then adding backwards. Don’t ask. It’s possible with ME math.
Step 13 - reset the timer for the proofing.
Step 14 - have a lie down.
Step 15 - forget you have your science experiment.
Step 16 - after recovering from dizziness after rising too fast to race to the kitchen that’s 4 ft away, “yay! it’s proofed!” … and risen up the too small cup because it was supposed to be 1/4 the amount, over the sides and onto the counter.
Step 17 - scrape it into the bowl and add the rest of the flour that’s maybe the right amount and begin mixing. Hmmm, I’m sure I read that einkorn flour is a wetter dough. Ok, add more water. Then more water. Then more and ok, this kind of feels right. Einkorn isn’t as elastic because it’s low gluten.
Step 18 - read the instructions again for the next step. Whoops, olive oil was supposed to go in before kneading.
Step 19 - put dough back in bowl figuring I’ve already lost the flour and I’ve nothing to lose now. Stretch dough out and add oil. Knead again until it all feels incorporated. Phew!
Step 20 - put into bowl, cover with plastic, take a nap.
With reticence, I approach the bowl. It has risen its 30%. Still succeeding then!
Step 21 - read instructions. Cut and make 4 balls and place on cookie sheet. Set timer. Lay down.
Step 22 - fall asleep and some time later wake up and realize the alarm has not gone off. Check in with Alexa; no timer set. Oh, no! Forgot again to listen for her response. No idea how long it’s been but at least I turned the oven on so go for it.
Step 23 - pat dough out on flour dusted paper. Then remember you have to prepare the ingredients. Sigh. Ok. Get it done. Put it on the pizza. Transfer it to the stone in the oven. Set the timer for 13 minutes because the book says 15.
Step 24 - lie down of course! But, anxious, I check in with Alexa and at 10 minutes look in on it. Hmmm, browner than the photo. Pull it out to cool. Read the book again. Oh, on a stone it’s a lower temp. And not supposed to be on paper. And only 10 minutes. The paper is for cooking on a steel pan. Whoops.
Cut, eat. It’s not inedible. Call it a win. And three more not inedible doughs are in the freezer!
Cynthia Uribe (U.S.)
Seek life and living... then meet it.
Originally posted in the ME-I Chat room on Facebook. The ME-I Chat room is a Facebook group that utilizes the room feature allowing members to gather in video chats. See more HERE.
Cynthia lives, creates, and plays with her companion Molly who helps her keep her humor. Writing left her life along with gardening, baking, cooking, and many art interests when she became ill and very bedbound about 10 years ago. But all those are what helps her claw her way back to the living still. Writing is just now returning. Her most treasured is the last for her to regain. So she's put together a space for it and it's slowly growing.
The following is an abbreviated version of a much more detailed blog that can be found HERE. We sincerely appreciate Paul Mc Daid speaking up to raise awareness. ~MEI
The illness that it's OK to mock
by Paul Mc Daid (@paulthedaid)
Every so often, something strange occurs in the British press. An offensive article is published about patients who suffer from a well known chronic disease. Sometimes it is by an esteemed researcher or physician, at other times by a respected journalist. There is no backlash or ruckus kicked up; it just happens, is accepted, and the world moves on. Heads don’t roll, regardless of any inaccuracies in the piece. If any complaints are made through the appropriate channels, a worryingly large section of the establishment rapidly closes ranks around the writer. The perpetrator of what is effectively a hate crime, becomes the victim.
The illness in question is myalgic encephalomyelitis (ME). ME patients are sometimes labeled with ‘Chronic Fatigue Syndrome’ or CFS as well as ME/CFS.
The arguments contained in such articles are often scurrilous and baseless, and are calmly refuted by ME charities and patient groups. But similar articles stubbornly return like summer flies to be swatted away. Efforts to repudiate the stories continue, based on rational lines of thought and scientifically legitimate evidence. But patients and charities are mocked, jeered at, and accused of harassment simply because they lobby for truth and justice. I doubt this would happen in any other disease. So why does it happen to us?
Patients with ME are in the unenviable position of suffering from a disease that has no complete explanation, and no universally recognized treatment. Usually, the traditional solution begins with allocating levels of funding to study the disease commensurate with the suffering caused and incidence of the illness in the population. However, according to charities and patient groups, in the case of myalgic encephalomyelitis, funding falls pitifully short when compared to other similar illnesses. What is perhaps worse however, is that most of the funding is siphoned away by a small group of psychiatrists and psychologists who promulgate a psychosomatic theory of the disease that has been disproven many times over, but who also enjoy a disproportionate amount of influence within the British medical establishment and media. Their work has come in for fierce criticism from academics right around the globe, who say their studies and theories do not stand up to basic scientific scrutiny. When any patients complain however, they are branded as militants, activists, or worse - mental health deniers. The latter argument is particularly powerful and seductive, and consciously or unconsciously, deploying it allows the psychologists in question to behave more or less with scientific impunity.
A few weeks ago, The Telegraph published an article by a regular GP columnist (How I became a target for the ME Militants, Dr Michael Fitzpatrick, 26th Sept), which raked over the old, tired accusations once again. The article suggests that ME patients don’t understand that psychology plays a role in their illness and instead have a ‘fixation with the minutiae of immunology.’ Well, no. Patients are in fact fixated with getting better, that is all. And, based on the best available science, immunology is one route we could follow to develop better understanding and treatment of this disease. Immunological studies in the USA and elsewhere have shown, since the 1980s in fact, huge abnormalities in ME patients that could account for the spectrum of immunological symptoms reported. Inflammation is seen in neuroimaging studies, and impaired metabolism and energy production have been clearly demonstrated in the laboratory. It is thought that the immune system is somehow blocking cellular metabolism, leading to the most well-known symptom of crushing physical and cognitive exhaustion. But in the British media, the idea that ME patients might wish to investigate immune system abnormalities is something to poke fun at apparently. Because the old story goes that we simply don’t grasp the fact that the human body is complicated, and the mind and body are connected.
This is something that we already knew, and have always been on board with. It has never been the crux of the argument. As my own consultant, a respected Harley Street infectious diseases practitioner, puts it: ‘Your grandmother could tell you that if you stress an animal out it will get sick.’ The first thing he ever suggested I do when I met him was to meditate. The mind-body connection is something any enlightened physician or patient understands. It is a truth so obvious that it barely needs to be discussed. It is known technically as the biopsychosocial (BPS) theory of disease, and the ME lobby are time and time again accused of being cave-dwellers who deny its reality, and are afraid of the stigma of mental health playing any role in their illness. As such, the narrative suggests, we angrily reject any involvement of psychology in the battle to understand this complex disorder. Nothing could be further from the truth.
Virtually every ME patient I know is aware that their psychological state may have affected how they became ill, and affects their condition on an ongoing basis. Psychological intervention is usually welcomed by all. Further, since inflammation of the brain is suspected in this disease, more serious psychiatric symptoms also play a major role. It is not psychology or psychiatry we are at war with – it is a very small group of researchers who have an appalling approach to scientific methodology and medical ethics.
This political friction surrounding the management of ME dates back at least four decades, but is arguably more important now than ever before. Since the Covid pandemic began, roughly 5% of those infected with SARS-CoV-2 have gone on to develop lasting symptoms, that have identical properties to those seen in ME/CFS as defined by the IOM and the new NICE guidelines. This has led many Covid researchers around the world, including Dr Anthony Fauci, to conclude that at least a subset of these ‘Long Covid’ patients are in fact now suffering from ME/CFS. Some experts believe that the total number of those afflicted with ME & CFS – currently estimated at around 18 million globally – may triple as a result of Covid. Clearly, it is about time we resolved any lingering questions that surround how best to manage the disease, using the limited information we have at our disposal.
In his article in the Telegraph, this is opposite of what Dr Michael Fitzpatrick endeavours to do, instead choosing to muddy the waters by dragging up old, out of date ideas and accusations. The thrust of the article concerns a recent debate about the treatment of CFS patients in the UK, that the author says bears a ‘striking resemblance’ to one that he became embroiled in himself two decades ago. At that time, he penned an offensive Op-Ed in the British Medical Journal expressing that in his considered opinion patients simply don’t grasp the fact that psychology and medicine overlap. But the current debate Michael Fitzpatrick is referring to in The Telegraph bears no resemblance whatsoever to anything that was being discussed twenty years ago.
The recent disagreement surrounds the publication of new guidelines by the National Institute for Health and Care Excellence (NICE) on the best way to manage ME/CFS in the UK. NICE were due to publish new, updated guidelines in August after a three year review, but at the last minute were blocked by a small group of influential establishment figures. No-one has ever prevented NICE from publishing guidelines before – it was an utterly unprecedented occurrence. The ME community was upset, as we had been for many years attempting to overhaul the current treatment options for ME, based on patient experiences and new evidence. The existing NICE guidelines stated that a form of physiotherapy known as Graded Exercise Therapy, or GET should be offered by GPs and physios to anyone diagnosed with ME/CFS, based on research carried out by psychologists. However, patients have long claimed that this therapy is not only ineffective - but it actively makes them worse. GET has been the main form of treatment in the UK for decades, based on the psychosomatic model of the disease that has always been controversial. But as time passed, worrying reports began to emerge, suggesting not only were the therapies ineffective, but they were harmful. Most patients who underwent GET programs were getting worse, they said. Sometimes severely worse, and sometimes permanently.
Dr Fitzpatrick bemoans the fact that NICE wanted to change their guidelines based on ‘scientific evidence’ (the inverted commas in this case, are his, and not mine), and have been bullied into this position by ‘ME militants’. The ‘evidence’ however, is not quack science that comes only from the ME lobby. It is evidence from Harvard, Columbia, Stanford, and similarly respected research centers. The evidence has now been studied very closely by independent and highly experience men and women at NICE for three years. I have never heard a doctor sneering at the idea of evidence before. It is one thing for scientists and doctors to disagree about the interpretation of evidence. But this is the first time I have heard a physician dismiss the concept of evidence so disdainfully.
Dr Fitzpatrick also dismissively describes ME as a disease which causes ‘extreme tiredness and generally feeling unwell.’ This is probably the most inaccurate and trivialising description of the illness I have ever come across. Alas, none of this humiliation is new. There is a lengthy history of journalists attacking ME patients, and spreading misinformation about the illness and the behaviour of campaigners. Rod Liddle, who had once previously labelled ME sufferers ‘pretend disabled’, wrote in the Times in 2015: ‘They are hopping up and down with rage over at the ME association... At least they would be if they could. As it is, they are probably sitting quite still.’ He went on, ‘No matter what evidence is marshalled by the likes of Simon Wessely, some sufferers cling with grim and livid determination to a non-existent biomedical explanation.’ Mr Liddle has had a bee in his bonnet for a while about this illness, and has further smeared patients elsewhere. Describing the fervour with which ME patients have to protest and fight to gain access to medical treatment, he saw fit to opine in The Spectator magazine: ‘When it is finally proven that ME is a mental health disorder, I am convinced that it will be the least of their problems.’
The position of the ME community in the broader debate is easy to summarise: we know that the mind and body are linked. However, far too much funding has been spent purely on those who study the mind - specifically, a small section of the UK psychological community who ignore biomedical research. Of course, a holistic approach to medicine that includes psychology is the best way to approach any chronic disease. But you can approach holistic medicine by speaking to alternative health practitioners, by going online, and by reading self-help books. When you speak to your doctor or consultant, you want not just holistic advice, but conventional medical advice. If you were suffering from cancer, you would choose to be referred to an oncologist, not a psychologist. If you protested, would that mean you don’t understand that your illness is multi-faceted, with a psychological component? Of course not. But this is the ridiculous situation ME patients find themselves in when they ask that biomedical researchers have their research applications approved. Dr Fitzpatrick says however, that by ‘repudiating any recognition of psychological factors... ME advocates implicitly endorse stigmatisation of mental health disorders.’ Wait a minute - because we want a scintilla of biomedical funding in this field, we are guilty of undermining a separate group of illnesses that bear little resemblance to our own? As someone who has suffered from depression, and who has lost a close friend to suicide, I wholeheartedly reject any notion that we have stigmatised mental health disorders in any way. This is the kind of slanderous nonsense that we have to deal with on a constant basis.
In 2017, after years of lobbying by the ME community, NICE announced that they were going to revisit their guidelines on the use of GET for ME/CFS. In November of last year, the draft guidelines were published. After three years spent scrutinising 1,500 peer reviewed scientific studies, a judgement call was made. There was no ambiguity. The draft guidelines stated that “there is NO evidence to support the use of GET as a treatment for ME/CFS, and due to reported harms from the ME community... it should not be offered as a treatment for this illness.” The guidelines continued, “There is no evidence that CBT is a cure for ME/CFS, and it should only be offered as a supportive therapy.” Everything that campaigners had been saying for decades finally had the support of the highest medical research authority in the land. Then of course, came the twist.
The day before the guidelines were due to be published in August, the Royal College of Physicians and the Royal College of Psychiatrists announced that they would be telling their members not to follow the guidelines. In effect, the revision of the guidelines was being blocked. NICE had no choice but to ‘pause’ the publication. Since its inception, the purpose of NICE was to dispassionately, objectively review all scientific evidence and advise practitioners on what therapies and protocols were safe and effective. They had never been challenged, undermined, or blocked in this way. Dr Andrew Goddard, president of the Royal College of Physicians said in an interview with The Guardian, ‘GET is not without some risk, but benefits quite a lot of people.’ Technically speaking, you could say the same thing about thalidomide. The devil was in the details. What was the scale of the risk? What was the scale of the benefit? Repeated patient surveys from all across Europe had shown that the majority of those who undertook GET deteriorated, whilst only a small minority reported an improvement. Such a woolly, nebulous statement from a man of his office was shocking.
In the end, after a roundtable discussion with all the concerned parties on October 19th, NICE opted to go ahead with publication of the new guidelines, despite the disgruntled Royal Colleges. It was a huge victory and vindication for ME patients. It underlined the fact that science is on the side of ME advocates, and ME advocates are on the side of science. Those who attacked us for lobbying were in fact themselves the poorly informed harassers. None of this could have happened if we had not rattled the cage. But this is just the beginning for us. This is just common sense prevailing – protecting patients from a dangerous therapy that is more likely to harm them than help them. Decades of lobbying just to get to this point, and always, always swimming against the tide.
The UK psychiatrists in question have not given up, already publishing a paper and an article in the Daily Mail defending their ideas. Brian Hughes, a professor of psychology at the National University of Ireland in Galway, and author of ‘Psychology in Crisis’, believes they are suffering from denial and cognitive dissonance. They are unable to let go of therapies that they developed themselves, based on theories that they developed themselves, despite the fact that they have now been completely discredited. And so, the fight will continue. We don’t want to fight. We are exhausted, and want to get on with our lives. LINK
The Dalai Lama once said that anger is never justified, but righteous indignation is sometimes necessary to remove injustice. Amaritya Sen, the Indian Nobel prize winning economist famously said that human beings have no definition for ‘justice’. Instead, he said, we must simply seek out injustice and remove it wherever we find it. That is all the ME community have ever tried to do. It’s hard to know how to react when I read articles like Dr Fitzpatrick’s.
Should I just ignore it, and get on with my life, for the sake of my mental health and happiness? That is the advice of ME ‘activists’. Don’t get upset, don’t engage, lest you be branded a psychology denier and accused of online harassment. This is usually my approach. But then sometimes something in me snaps, and I think: if we don’t fight, nothing is going to change. Does this make me a militant? Actually, yes. Perhaps it does. Maybe I can give him that one. I have been recently converted.
ME International’s position is that myalgic encephalomyelitis is a complex, acquired multisystemic disease apart from CFS and ME/CFS, that all patients need to be screened for ME in accordance with the IC Primer, and all research labeled “ME” use the ICC.
See full position paper HERE.
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.
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.”
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
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.
Guest blog by: Joan McParland, Founder & Voluntary Coordinator
The information provided at this site is not intended to diagnose or treat any illness and is not to be considered as medical advice.
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