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This sounds like something that would broadly reflect disease severity, wealth, living circumstances etc. Comparison with a control group adequate for this purpose hasn't been done so who knows whether this tells us anything about FND in particular as the authors seem to think.

It would have been better if this test worked, but it's also good to know it's not reliable.

Maybe they are realizing that it's not a great idea to ask chronically ill people to try and remember how they felt before the illness which may have been years and decades ago.

I disagree with this sentence. We have no idea if relationship satisfaction or depression are impacting CFS-related fatigue. The impact could be quite plausibly be zero. It is just difficult to tell because fatigue is a nonspecific symptom of various problems and we cannot tell how much each of...

I suspect that many of these testimonials about patients making a miraculous recovery with some commercial program are made up. It is trivial to make them up, and no less of a lie than outcome switching or other misleading research practices which the same kind of people seem to have no problem...

They could argue that the physical functioning scores reflect perception of physical functioning and that this perception causes poor health and poor work status. All their theories are based on causally interpreting such correlations through a psychogenic lens, so why not here too?

@Chris Ponting this will interest you.

The NIH has a page on this: https://www.niaid.nih.gov/research/hereditary-alpha-tryptasemia-faq (I edited this so that it quotes the NIH directly)

This study is actually advertising.

It is difficult to definitely prove that the treatment caused this deterioration but this adverse event must be recorded. I think they will try to hide it.

@Jonathan Edwards can you use this story for the NICE hearing? I think the psychological abuse / brainwashing aspect hasn't been considered much. Telling this story would really illustrate the point that patients can be ruined by CBT/GET while still giving the impression to therapists that...

When you feel that this is about to happen, you could drink plenty of salt water and lie down, with feet elevated above the level of your head. Does this make it better? Does this tend to happen within a few hours of eating?

In case you have not been tested for POTS, it would be a good idea to do so.

When a biomarker is discovered, what will happen is not that psychiatrists will continue to treat CFS patients with CBT/GET as White appears to hint at, but that CBT/GET will be shown to be ineffective at treating the illness beyond any reasonable doubt. This is easy to predict because...

White should be ashamed for ever promoting the false illness beliefs and deconditioning theory. He has no credibility as far as any attempts to discover the cause of ME/CFS or any hypothetical subsets is concerned.

I am convinced that the gut is relevant to my illness. I think it influences the illness trajectory and severity and that there is some problem with increased permeability. This could also explain why patients often say they feel better with gluten avoidance despite not having celiac disease...

What a poor girl. It must have been a nightmare. I'm not surprised she broke down in the end. There is only so much daily torture in the form of forced exercise that one can handle. PACE is of used to justify this kind of nonsense as it is cited as evidence that rehabilitation is possible.

Judging by the response you've had, they will probably consider it a normal setback. In their narrative, this kind of thing is normal and not harm. You're supposed to keep going and overcome your erroneous belief that you have an illness that causes exertion intolerance and then you get better...

These two items on the questionnaire are the closest to PEM: "Pain increasing the day after you are active" and "Fatigue increasing the day after you are active". The latter apparently was included when patients were asked about symptoms that were missing from the questionnaire. In this study...

Exactly. Their aim is to produce a "generic functional disorder questionnaire suitable for patients with a diagnosis of IBS, FMS, and CFS". Without a comparison to similar organic conditions like multiple sclerosis and diabetes they do not know if the result might just be a questionnaire that...