Only 30 (?)% of ME patients have these AABs against ß2/m2.
With respect.
This is 30% of people with
CFS have these antibodies in small scale studies. Undoubtedly due to ststistics, some will have ME. Until we have a new test, and using an ME criteria separate from the SEID/CDC CFS clinical based fatigue syndrome that does not permit CFS or ME patients with established inflammation to be in research studies (inflammation would lead to explained central fatigue) we cannot legitimately call any autoimmune subsets of CFS or indeed anyone else (including Ron's patients at the OMF) genuine ME patients.
A compromise may be to call ourselves, (as individuals told we have CFS, ME, ME/CFS) prototype Myalgic Encephalomyelitis patients.
Without extensive and expensive organic CFS research based tests that MIGHT mean someone told they have ME truly has it, a patient being diagnosed with ME is not reliable. It's infuriating, but this is reality.
Due to this we cannot say only 30% of ME patients have a certain biological finding because remembers these patients only need to meet subjective self reported symptom based CFS criteria, all which require no evidence of being organically ill, to enter a study on ME/CFS, thus wrecking the research relevance and accuracy!
So yes, it could be only 30% of ME patients have an autoimmune finding, such as adrenergic antibodies. Or it could be 100% of ME patients do, and 70% were misdiagnosed. Or it could be 0% of ME or CFS do, and 30% were maybe even undiagnosed POTS patients.
The exception to this is if cohorts of ME/CFS with PROVEN neuroinflammation then had the adrenergic antibodies found in CFS and POTS research, and all other research that has been completed of good quality and apparent consistent abnormal findings.
For this to happen it is critical that the FDG-PET scans of the Japanese using optimised radioligands, and Younger's MRI thermal scans link up to interesting CFS neuroimaging studies of apparent brain tract damage, (DTI scan), increased ventricular lactate, increased choline and then maybe all this can link back to potentials to say, yup, organic CFS is definitely ME.
Then honest scientists can agree, ME is 100% not Fukuda criteria CDC CFS and yes most of our ME patients have autoimmune brain markers, and so some develop POTS and or autoimmune psych illnesses - for which the poor patients were too ashamed to confess to, so suffered in silence fearing further discrimination.
To be honest, at best, this is 10-20 years away with the current lack of robust government funding because even if the OMF and friends proved CFS is a novel metabolic illness, these are not neuroinflammation studies. Ron's group would not be proving ME exists, all they would do is prove CFS subsets are organic. Yet we knew this anyway, we just had little proof.
The sad reality is CDC and Beth Unger, Fauci at NIH and others do NOT want ME to emerge from the muddle of CBT/GET era CFS, which is why if you see the proposed new CFS criteria, they still fail to detect ME and would still block many with ME appearing in what researchers call ME/CFS research. This is how we ended up as ME being subsets of CFS in the first place and psychological theories running rampant, and tragically, they still do this and get funding for it.
The situation is very difficult politically to get out of. Funding won't be given for honest biomedical research on a large scale as proving ME is organic subsets of CDC CFS/SEID, means social care bills would rise for insurers to potentially, millions of dollars over a lifetime, each person who is bedridden. It would also cost socialised medical systems in the UK and other countries, hence CDC cosy up to the extremist British psychiatrists who claim CFS patients pose more danger than the Taliban, in the educated British press. They are then awarded.
As a community we are ignored and still hated by some - like LGBT actually. Like gays with HIV we CFS are all left to die but in severe ME this death is slow motion unlike AIDS. Once the CDC agreed to this in 1988 this was the most cost effective decision for them.
The people in charge of sacrificing us don't give two hoots about biological research to prove ME exists- hence to this day, they ignore us, because to attain their $400,000 pension plan the legitimacy of ME has to be annihilated, and the annihilation will never end for as long as ME is hidden within fatigue based criteria that remove ME patients with explained reasons for fatigue (ME) from ME/CFS.
This is why you get a small autoimmune subset here and there you pointed out. Logically, these are likely the PWME, the 30%, or in terms of charity representation in the UK for example - the 25% group. But without the tens of millions per year we need, we can't prove it.
Catch 22 and it's not just us caught in a sticky political web it's the scientists who try and save our lives.