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The early years of my illness are entirely consistent with downward spiral causing increasing and permanent worsening. It continued until I gave up trying to function normally. Then I stabilized. The later years are consistent with occasional and/or mild overexertion not being an obvious cause...

I found the resulting discussion valuable and interesting. "true ME" does seem like attempt to provide an answer and explain what is happening and why but like so many other such attempts it turns out to be incoherent. If patients did not feel as abandoned and disbelieved, they might not need...

I believe that having a long term illness is a major risk factor for being abused or being subject to violence. This abuse could easily start well before it is apparent that a chronic illness is present. That could on some analyses make it look like chronic illness follows abuse, when it might...

It's okay to prefer and use the term ME. Shouldn't everyone with ME/CFS have a MRI to rule out MS?

Maybe you have noticed that I'm often upset about this topic. That is why. These people then write letters to for example the NIH with similar messages about CFS not being real, and real ME being defined by the ICC with its list of hundreds of symptoms, and that the cause is enterovirus outbreaks.

That seems like a way to make sense of all this. I wonder if, ironically, the clinical picture of the long term effects of the infection would be closer to what today we call ME/CFS than to the kind of "real ME" proposed by certain people.

In children with some mitochondrial diseases, blood levels of this molecule are about 11 times the normal. Here in ME/CFS they are only slightly higher. I am not sure but I think this suggests it will not be found to correlate well with symptom severity in ME/CFS.

A portion of the latest comment. That seems worth responding to. I vaguely remember that SPECT scan is another questionable or nonspecific diagnostic test promoted by an elite ME expert. Am I wrong? As for the second paragraph, I would say the true ME crowd has a tendency to engage in illness...

I am not getting the feedback that indicates others understand what I'm trying to say. I want to see if others can distinguish between feeling fatigued and a feeling of lacking energy reserves. I think they can be quite distinct, but describing that seems very difficult. Something in the body...

Threads have been merged Fatigue as presence of sensation or absence? This is another one of those posts where I try to describe some highly subjective symptom in the hopes of improving our understanding of the illness. I think that everyone knows the kind of fatigue where there is an intense...

This kind of advice seems to me better than the alternative of the patient going undiagnosed or getting a conversion disorder diagnosis. But you could criticize some of it for lack of reliable evidence, especially the treatment advice.

Endorsing "feeling unwell after physical exercise or exertion" seems vague. We do not have a validated questionnaire designed to identify PEM and it would have been useful here.

Let's see if they find proteome changes consistent with Fisher's hypothesis.

I did not understand what is meant with guerilla tactics. I have yet to see patients moving in small groups to deliver hit and run attacks against a stronger enemy. Maybe the idea is that patients should perform the valuable role of being outsiders that are capable of seeing and acknowledging...

There is a case report of a man supposedly cured by consecutive FMTs. https://m.scirp.org/papers/75761

As do many other things, like nutrition and air quality and income. But we don't go around labelling everything a nutrition dependent, air quality dependent, or income dependent illness because these things are usually not central. I suspect these things often play a bigger role than...

Like the CBT/GET enthusiasts, they are working backwards from established dogma, trying to prove it is true, rather than trying to find out what is actually true.

Is a little open medicine foundation empire a negative? I like the idea.

The other day I read about a young woman in Denmark that fainted multiple times throughout a year and recently had a severe crash, with apparent onset of some illness that hasn't been identified yet. She had problems going to the toilet due to extreme fatigue and weakness. Tests at hospital were...

Psychosomatic claims should be questioned because even when they are vague, contradictory, lacking real scientific basis they still go on to have a very large influence on politics and healthcare of patients.