Experiencing any of those things suggests you have ME. If you just experience fatigue and don't think you have any of these things, or if you have a different suite of symptoms altogether you may have been misdiagnosed which we know happens far too often. It does not mean you are not ill, or less ill just that it is another fatiguing disease of which there are many.
Though it is just as likely that the way these things are described does not reflect your experience of the disease.
But problems with with energy, shorthanded to PEM is the cardinal symptom of ME and has to be the factor that decides who goes into a trial.
Having said that, I canto go into a trial because of other diseases I have. For a trial you need patients who definitely have all the classic signs. When you get biological information from them it can be used to test people who are not so classic.
Using only participants who have a sudden viral onset then get classic PEM is the best way to get answers for all of us.
I respectfully disagree with some of this.
1) I don't see any diagnostic criteria where PEM is listed as *THE* cardinal symptom. IOM, CCC and Fukuda all require fatigue as well or in addition other things.
2) I agree with "problems with energy" being common to MECFS. But that could mean different things to different people. If you forced me to lie in bed for 6 months and do nothing, I will still have problems with energy and this is not PEM. People with ME/CFS are sick at rest.
3) Serious question--if people for whom fatigue is a minor issue--if you lay in bed and basically do nothing for long periods, does this mean that you could potentially be very productive with doing non-physical tasks, like writing, etc., while you are resting?
4) Back to this study--I support using wide criteria for almost everything. A lot of people have different symptoms as their cardinal symptom, and some don't have one or two of the critical symptoms. I saw that Jen Brea said that she never had sleep issues--under IOM and CCC she would not have (had) MECFS.
5) If you favor a reductionist approach (sudden viral onset only), then perhaps a truer reductionist approach is that the only people who should go into this study are the people positive for the alleles HLA-C*07:04 and HLA-DQB1*03:03. These folks might be the only people with true ME/CFS, as there is a known genetic signal for their disease. The problem with this approach is that you would only be catching 20% of the total ME/CFS population (i.e. reductionist approaches will not capture the full breadth of the Syndrome). Plus you already know what the likely genetic signal is for their disease. A wider net may catch more fish.
6) If they do a good questionnaire for this study, then all the noise should be sorted out. Maybe people with no sleep symptoms but everything else have problems with allele X, people with PEM dominance with minimal fatigue have issues at allele Y and people with people with fatigue dominance have allele Z problems. With a study this large I believe that there should be sufficient scope to look at all this, and therefore I advocate for less strict inclusion criteria.
7) If there is concern about MECFS fatigue being confused with other fatiguing diseases, there could be a check off list for this study to ensure that people were screened for other fatiguing diseases like MS (did you have an MRI to rule out MS?), etc...
