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A better answer would be that having ME/CFS doesn't make one immune to deconditioning and deconditioning will contribute to some degree to how people are feeling. The concept of deconditioning was abused to deny the existence of an underlying illness and the suffering of patients and that's why...

I don't know but in theory the following scenario is possible: Suppose that there existed an online forum for young ME/CFS patients in the Netherlands. It may only take a single influential and dedicated individual that promotes the survey in this group to skew the data towards a young age of...

Not moving much makes me feel bad, a sort of constant malaise, and leads to a worsening of orthostatic intolerance. Also, low muscle power makes many activities more tiring. These things add to the symptom burden and make it harder to do things. Also, becoming fit was a long and slow process...

Over the last years I've been able to do more and more exercise. I regularly ride my e-bike and am fitter than some other people I've spent time with, yet I still consider myself disabled because I can't tolerate a whole day of activity in the same way a normal person can. I end up feeling bad...

So how does this review conclude that GET is curative when the NICE guideline concludes it's not?

Seeking information allows people to recognize and name what they're experiencing. That's how it becomes a "risk factor".

Is that the GET which had so little effect that its main proponents had to redefine recovery to mean continued disability in order to be able to make misleading claims about recovery? It seems that the authors of this study were also misled.

If there is proteasome dysfunction, why has it not been observed in tissue samples? Should it not lead to accumulation of proteins that can, eventually, be clearly seen?

Re. eicosanoids and pain without inflammation. I remember that when the illness began as adolescent, one noticable change was less tolerance of certain foods like pizza. Eating too much fatty meat or dairy products in particular seemed to cause reactions. Typically I would feel unwell in the...

This is presumably why when I developed small fire neuropathy there was also new food intolerances and allergic reactions.

By the way, I've met some diagnosed autistic adults through an association, and here's what I found: It seems easier to connect with them, but maybe that's just due to my feeling of similar life experiences. Most were women. Mental and physical health issues are very common in this...

https://molecularautism.biomedcentral.com/articles/10.1186/s13229-022-00486-6

Maybe the same underlying molecular abnomality tends to manifest differently depending on the gender (and age of onset) and some additional factors.

mTOR overactivity has been proposed to be relevant to both autism and ME/CFS. Loss of mTOR‐dependent autophagy causes autistic‐like synaptic pruning deficits in the brain.

The simultaneous experience of exhaustion and difficulty entering into a restful relaxed state. I suspect the wired state is sympathetic arousal that occurs when we try to push past healthy and sustainable limits, and allows us to keep going when necessary. Working on a better balance between...

By the way, my impression is that in some countries, like Italy, in comparison to the UK, it is more difficult to get a diagnosis of ME/CFS, unless the illness is severe. In Italy these undiagnosed patients are likely to get a FM diagnosis instead because the willingness to diagnose that and...

Is this the US study? Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning I'm guessing this is not the right study because it talks about slightly different things.

FUNCAP isn't useless, it's just inadequate. A person is disabled if they can't perform a normal amount of ordinary activities of daily life for several days every week. In my experience this happens at a much lower severity level than the one where PEM begins being triggered by relatively...

I'm sorry to disagree, I think FUNCAP is inadequate. While it does acknowledge the possibility that one type of activity can lead to a reduction of activities on the same day, it is still centered on the view that it is the type of activity that is problematic, and not the cumulative dose of...

Cardiopulmonary exercise testing tests the capacity to do high-intensity activity for about 10 minutes. A neurological examination tests whether the muscles and nervous system permit normal movement for a few moments. These tests are useless when the problem is the inability to sustain...