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When patients do not come first
NICE reported on August 17, 2021 they had paused the release of guidelines for treating myalgic encephalomyelitis and chronic fatigue syndrome.
A draft appeared last November and the final version was initially scheduled for April, and reset for August. An August 17th article at The Times (UK) envisaged that any recommendations based on fixed incremental increases in physical activity or exercise, such as graded exercise (GET) and cognitive behavioral therapies (CBT), would be abandoned after evidence based science demonstrates that recommendations risk patients' health and compromise good clinical practices, and therefore should not be used.
NICE guidelines set medical standards which will have a wide spread effect on treatment of ME and CFS patients worldwide. Doctors are expected to comply with those standards so medical education used worldwide will be based on these guidelines. Although it is always possible to refuse to follow a particular standard in any individual case, it is a professional burden for the doctor to follow guidelines. Right now, NICE guidelines in use are from 2007 and have promoted a psychiatric approach that has been shown to be unsafe for patients whose symptoms are exacerbated by GET. They have developed a treatment program causing harm, medical trauma, and institutionalized discrimination.
Patient organizations have long been accused of anti-science activism. These proposed NICE guidelines went through a rigorous process, finding that GET and CBT were not scientifically shown to benefit ME patients. This delay in release of guidance that will change treatment protocols is based on resistance from some parts of the medical establishment with vested intewrests in continuing GET and CBT treatments and not on scientific evidence.
In Georg Monbiot's words "@NICEComms has to decide whether it's science-based organisation, or whether it's beholded to a lobby group that refuses to let go of dangerous and long-discredited quack 'treatments' for ME/SFC". (@GeorgeMonbiot)
This divergence of opinion may be caused by lumping ME and CFS under one umbrella (ME/CFS)
Much has been written and discussed on whether myalgic encephalomyelitis (ME), myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), chronic fatigue syndrome (CFS), and systemic exertion intolerance disease (SEID aka ME/CFS) are the same disease, and whether the diagnostic criteria for ME, ME/CFS, CFS, CFS/ME, and ME/CFS-SEID select the same group of patients.
Myalgic encephalomyelitis was initially described and/or defined, during the 20th century, by clinicians such as Ramsay, Dowset, Behan, and Hyde, as an enteroviral infectious neuromuscular disease that appeared either sporadic or at epidemic bursts. Later, government agencies from the USA and UK designed ad hoc "perverse" definitions, criteria and names that would turn the discourse of a serious biological illness onto a pathological malingerer that could create a false, or profoundly exaggerate, illness (physical or mental)j to gain external benefits such as avoiding work. The term chronic fatigue syndrome was then coined by psychiatric researchers and new broader criteria developed that would include up to 90% of patients with other pathologies.
Psych lobby and media control
The most important, biased, misleading, tortuous interference with real science was the PACE trial, which was signed by recognized British psychiatrists and media impact controlled by the Science Media Centre and the British Medical Journal. It cost $6.8M, financed among others by the Medical Research Council and the Department for Work and Pensions (UK). An important turning point was a Freedom of Information Act launched by a severely ill patient that would enable the release of the original database and show a flawed trial that did not support the use of CBT and GET. Sadly, the harm was done and NICE guidelines of ME and CFS followed the PACE trial's inaccurately reported results stating these were best practices for treatment.
ME (Myalgic Encephalomyelitis) International (MEI) is an international association which promotes clarity: the non-standardized and overlapping definitions in the USA and other countries have resulted in an inability to compare results of multiple studies because those suffering from chronic fatigue syndrome (ICD code R53.82) and other vague criteria are mixed in with those suffering from ME (ICD G96.3). This premise is based on the use of the International Consensus Criteria (2011) and the accompanying primer (2012) for diagnosis and treatment. The ME IC Primer is a valid tool to diagnose and manage the disease and guides testing and treatment for those comorbidities or symptoms that can be treated. In addition, this primer offers tools that empower the patient. There is no recommendation of GET or CBT in this expert advice and as a whole, they move away from the biopsychosocial approach - know by many labels such as medically unexplained symptoms (MUS), central sensitization syndromes (CSS), which defend the existence of an erroneous message of pain or fatigue and an attitude of rejection/phobia of the patient as the basis of the disease.
Global Leadership Committee - ME International