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It would be good to have a short questionnaire that can be used by doctors and patients to get a sense of whether someone has PEM. In my opinion, if non-delayed reactions to exertion are allowed to count as possible indicators of PEM, the questionnaire would be too unreliable. By focusing on...

I'm a native German speaker. Belastungsintolleranz doesn't mean exercise intolerance. They translate it that way because they think that the equivalent in English is exercise intolerance. In German there is different word for exertion intolerance so it's not that. In my opinion a more...

If someone is able to increase the amount of exercise they do in a week, at the cost of reducing other activities, this is not an indicator of reduced disability. At best it represents an shift towards an overall healthier lifestyle, where unimportant sedentary activities are replaced by...

Sorry if this has been asked, but if a part of the causation of ME is in the brain, how might a causal loop involving bone marrow and brain work? Is a model possible where brain and bone marrow (to simplify things) communicate with each other? Or is it more likely that the brain genes...

Yes, I argued the same thing. It's only logical to search for alternatives when system is unable to help or exhibits dysfunctional responses to one's health problem. At first you go to the GP. At some point you realize that you don't feel understood or taken seriously. Once you've overcome the...

There is also some hypocrisy. In psychotherapy I had the impression that "independence" from the therapist was not desired, and the "social skills" and "communication" in a form that is critical or not in the self-interest of therapists is discouraged. If one spends too much time in these...

In my experience psychology looks down on people who think they are a victim of injustice because that's seen as a bad attitude (whether or not it is true seems to be of no interest). We're supposed to believe that we forge our own destiny and be blind to the fact that we're profoundly...

It seems like there are three categories: fatigue that does not change with activity, symptoms directly triggered by activity (during or right after), and delayed malaise triggered by activity level above a threshold. For me, only the third is PEM. The problem with these three is that there's...

It is unnecessary to discuss FND in relation to ME/CFS. Doing so only gives the impression that FND is somehow relevant to ME/CFS. I know these discussions happen only because Stone, Carson and a few others are trying to connect FND and ME/CFS but it should be fairly obvious to anyone that they...

The age matters, no? I presume you don't get SFN when young or middle-aged and healthy. There has to be a reason for low nerve fiber density other than aging in these age groups. The reason is a disease of some kind and the SFN is just one manifestation of it. My grandmother also has symptoms...

That describes my cognitive fatigue as well. The "over time" part is important... the limitations become apparent as I exert myself, and once the brain is exhausted, it does not recover as quickly and easily as a normal.

I also wanted to add my special perspective as person who used to be much more sicker and can now do physical activities but who still considers himself disabled. My feeling is that questionnaires are failing to capture the limitations that I still have because they ask questions such as "can...

Is there a way to express the idea of limiting exposure to triggers, in particular activity, sensory stimuli, etc?

All this said, I can also see how taking responsibility, in the sense of not relying on others for support, might just be the only realistic solution, simply because it seems difficult to find a person that I can actually rely on for this kind of support. Such a person would need to have very...

I live in a different country and culture where expressions have slightly different meanings. Even if the literal translation may be the same ("taking responsibility") the meaning and the way it is used may be different. Italians are very social and one of the most common relationship problems...

Another experience was a woman trying to flirt with me. I was stunned and did not know how to react and felt insecure about not being "normal". I'm also struggling to build social life for myself. It's difficult for me to relax and enjoy myself, have nonserious interactions with other people...

No, but knowing this on some rational level is different. Living with disabling chronic illness destroys one's sense of self as a capable person with a unique identity and so my initial reaction tends to correspond to that self image. It means having a habit of being skeptical of the idea that I...

Two notably contrasting events that occurred in the last few weeks: Two people proposed taking responsibility as the right approach to my problems. I felt like they could not understand my situation well and were judgmental. They came across as immature, but I accept that they might have a...

Having some support in some areas of my life would be helpful, but this seems to be considered inappropriate or immature. I have interacted with people who seem to believe that taking responsibility is a solution for every problem and they don't like my attitude. I feel like I'm being...

Maybe "somatizing" is just "complaining too much about how horrible the illness is" (from the perspective of the person listening to the complaints). Those who lack compassion because they have never experienced that illness could think that patients are complaining too much about something that...