I think false positive PEM identification from GPs is an extreme rarity. And I do not mean that yo can give an ME/CFS diagnosis based on PEM only. Of course you need the rest of the symptoms that is required -whatever criteria is being used. My main point is that as of now I think M;E/CFS is severely underdiagnosed. Furthermore usually extremely delayed if given. As of now I see no sign of hospitals/ consultants/ specialists moving towards acknowledging ME/CFS or tacking responsibility for the disease. So that leaves me with focus on GPs.
Should we initiate development of a new, short questionnaire to identify PEM (to aid diagnosis)?
Jonathan Edwards
Senior Member (Voting Rights)
There was a study from the USA which, if I remember rightly, indicated that doctors overdiagnosed ME/CFS quite a lot, in that most people with the diagnosis on their records did not think they had it. I suspect there is both marked underdiagnosis and overdiagnosis, depending on the doctor.
Utsikt
Senior Member (Voting Rights)
I think we’ve seen several studies showing that self-report of ME/CFS is much more prevalent than self-report a doctor’s diagnosis of ME/CFS, which is much more prevalent than fulfilling e.g. the CCC criteria based on questionnaires. This indicates that over-diagnosis is prevalent.
But I have no doubt that there are also people that meet the criteria that have not received the diagnosis, or that have received an FND, MUPS, BDD, PPS, etc diagnosis instead. Or just depression, anxiety, etc. The average time to an ME/CFS diagnosis is >5 years in Norway if I remember correctly.
Both situations need solution, but ideally the solution for one should not make the other much worse. Which is why I’m apprehensive about questionnaires or sets of questions without also making sure the false positive rates aren’t too high.
I agree that it might be viable to focus on GPs in the short term in Norway. I fear we’ll need an effective treatment to get the psychosomatics to back off, or at the very least to get someone else to «claim» us. The authorities have shown they are incapable of seeing through their charades, or that they simply don’t care.
The lack of intense rants here about it being worse?
I think that's a possible factor in determining PEM. I can't recall seeing a poll about abruptness of PEM onset. For me, PEM was quite abrupt: baseline ME symptoms one minute, then feeling them flare up dramatically. I'm guessing that there are PWME with more gradual increases, which leads to whether there are multiple mechanisms that lead to an increase in symptoms following a trigger.
Depending on the study's goal, there should probably be study-specific criteria for PEM. While that makes studies more difficult to compare, we don't have a good enough understanding of PEM for that.
I see that as pre-defining PEM based on an assumption (that there's an energy limit). My PEM did not seem to be based on energy limit; it seemed to be based on exceeding the accustomed strain on muscle tissue. A minute of unaccustomed but not very energy intensive exertion would trigger my PEM, while hours of accustomed highly energy intensive exertion wouldn't. While many PWME may correlate triggering with energy (ATP) usage, that might be a false correlation. It might correlate with muscle microtearing (and subsequent immune response) or gut microbiome alteration or vagus nerve activity or whatever else that occurs from activities.
Nightsong
Senior Member (Voting Rights)
In relation to diagnostic unreliability I recall two other salient papers: the first being the Samms-Ponting paper assessing various different sub-cohorts from the UK Biobank and their questionnaire responses which showed high phenotypic instability.
The second was the Johnston et al. paper from 2016 which found that, of "535 patients diagnosed with CFS/ME by a primary care physician" in an Australian cohort, "30.28% met Fukuda criteria. A further 31.96% met both Fukuda criteria and International Consensus Criteria. There were 14.58% reporting chronic fatigue but did not meet criteria for CFS/ME and 23.18% were considered noncases due to exclusionary conditions".