Speaking as a UK CFS/ME/undiagnosed sth else sufferer, with multiple biomedicallly proven probs common to the CFS/ME and fibro community, I believe we must be careful of defining ME as bad ME/CFS and CFS as mild ME/CFS.
Ultimately ME just that - myalgic encephalomyeelitis, regardless of severity of symptoms and possibly with different symptoms according to aetiological agent e.g late stage Lymes causes encephalomyelitis, but if you have Lyme's ME you will probably have numerous symptoms typical of Lyme's. (I know soem America CFS brain scans and spinal fluids are different from American Lymes but that does not mean Lyme's does not cause ME, it may even be that the US CFS patients in the cohort did not have ME while the Lyme's did - multiple possible interpretations...)
Rituximabbers do not have ME but thay are apparently very sick. Dorsal root ganglionitis victims are very sick too. Autopsies in the UK have shown DRG but not ME in deceased ME patients.
What we need is actual proper investigation of patients to find who has what. Until that occurs no one has the right to say "I have real ME, you don't, coz I'm sicker than you are and my criteria are stricter" or such like. MS has aspectrum of disability but it's all MS. Why should ME be different?
ME is a working term which offers some protection to us all. I prefer CFIDS for comprehensive nature and accuracy but CFIDS is not WHO recogniosed as sb here once pointed out. For all its problems ME/CFS has the advantage of saying we are organically ill - some have ME, but those among us without ME may be just as sick and until proper medicine is done on us we do not know who is who - and no criteria can tell us , only proper biomedical investigation for actual ME.
Our great enemy imo is not the term CFS, but the iniquitous doctrine of false illness belief (DFIB), An inversion of medical practice which means all of us, whatever we have, are after a few routine medical tests labelled as somatisers and not in the sense of people, who like Parkinson's patients, lupus patients, MS patioents, psoriasis sufferers etc may be having some stress input into a physical illness but basically people with illness anxiety. This is still the guiding principle of treatment in the UK , with the pretence that we are deconditioned (for which read not classical lack of fitness but a hysterical/hypochondriacal driven l fear of exercise and consequent sensitivity to exercise, with, yeh perhaps some lack of fitness and basically in need of CBT).
DFIB is what stands in the way of us all, whatever we have. As CFS/ME we stand together. And if we separate according to symptoms/criteria but without anyone ever having diagnosed any of us anatomically as ME or otherwise, how much do we really car about objective biological diagnosis?
Attack FIB doctrine at every opportunity. Demand proper biomedical investigation, research and treatment and the CFS/ME/whatever will solve itself. Do we want to see a situation where lots of sick people are deprived of the ME label coz they are not qite sick enough for certain criteria, end up in the hands of the FIBBERS, and have no recourse to support from the larger ME/CFS community, whan we do not even know for sure that they do not have actual, if mild, ME?
