Sorry, this has turned out to be a rather long ramble.
This discussion has focused quite a lot on one particular problem stemming from the poorly evidenced claims about what is happening physiologically in ME/CFS inherent in the
ICC criteria.
For example the choice of the term 'post-exertional neuroimmune exhaustion' PENE, instead of PEM, where PENE assumes nervous and immune system as the root of PENE, whereas PEM is a descriptive term about symptoms, and has no causal implications.
Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.
It also makes seemingly arbitrary numbers of categories that must be symptomatic, without any particular apparent logic to why PWME must have at least x symptoms from y sublists in category z. This seems designed not to clarify the picture for research or for diagnosis, but to arbitrarily limit who should be excluded, even if they clearly have PEM and most of the other requirements. There is also a lot of detail of possible variations of symptoms and signs that don't seem to have a research basis for being specific parts of ME/CFS.
A patient will meet the criteria for postexertional neuroimmune exhaustion (A), at least one symptom from three neurological impairment categories (B), at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and at least one symptom from energy metabolism/transport impairments (D).
While it can make sense for a particular research study to focus on pwME/CFS who have a particular pattern of symptoms, there is no clear reason I can see for
patients to decide that anyone who doesn't exactly fulfil all the specific requirements of the ICC definition doesn't have ME and should be treated differently.
We simply don't have the biological evidence to separate people with ICC ME/CFS from people with IOM ME/CFS which has a shorter list of required symptoms and makes no claims about what's going on biologically.
I find it objectionable for people who have decided they fulfil ICC to say to people who don't quite fulfil it to the letter that they don't have 'real ME' and shouldn't use the term ME, or that they should only use CFS.
I think the ICC criteria should be withdrawn as not evidence based and unhelpful both for research and for patients who are misled into believing they have something different from others on the basis of this document, and use the 'science' in the ICC criteria to provide unhelpful advice to fellow sick people.
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But this is not by any means the only misinformation stemming from physicians and being parroted by patients. There is the BACME version of 'science' based on 'dysregulation' that seems to involve mainly stress related reactions and 'central sensitisation'. They crow about having rejected the former 'science' about deconditioning and fear avoidance of exercise, as per the NICE guideline change, but they have replaced it with equally unevidenced 'science' and spout it to their patients, along with trying to use desensitisaton based strategies of gradual increases in exertion and sensory stimulation, all unevidenced and just as harmful.
I raise this on this thread because we have witnessed
a BACME therapist getting their patients to create a 'care plan' that included parroting this BACME 'science' basis and using it to justify incremental increases, which some of us refer to as pacing-up. In other words clinicians are training patients to spread misinformation.
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And then there's the brain retraining lobby. LP, and other commercial brainwashing schemes getting a foothold within medical establishments, and all the fringe stuff ardently promoted by some patients.
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In the UK, the NHS doesn't allow off label provision of a lot of the experimental treatments being tried in the USA and elsewhere, like low dose Abilify for ME/CFS and blood thinners for Long Covid, and various drugs for symptoms attributed to POTs and MCAS. This means if pwME want to try some as yet unproven treatments, they go private. This seems to have resulted in a subculture in UK ME/CFS circles where these approaches are regarded as essential to the care of pwME, leading to clashes with clinicians.
The potentially toxic mix of NHS doctors who still believe the old psychosomatic view of ME/CFS and private doctors promoting unproven theories and drugs, leaving poor patients in the middle of this unholy mess dying from lack of the practical care such as assisted nutrition. It's heartbreaking. I have no answers.
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Sorry, I seem to have strayed off topic. I think this situation leaves many of us in the UK in an impossible situation, with some advocates supporting the private doctors, some advocates still supporting the old BPS approach, or the BACME approach, some promoting brain training, some like the MEA creating a muddle by overstating some research, and the few of us trying to get to the bottom of it and do something about it feeling helpless and running rapidly out of energy to tackle an impossible mess. And meanwhile getting no medical care.
