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Since not everyone will be able to open docx files, here is the same file in pdf format.

There are several members here, including me, whose health problems started in adolescence. I hope you succeed in giving a voice to young patients This is my concern as well. I think you would first have to create a space where patients feel safe in saying what they really think. And maybe...

There are existing hospitals that specialize in rare diseases and who also do research. We as community could ask that these clinics (if they consent) to be given funding to add a unit for patients with poorly understood (but not necessarily rare) diseases with significant individual and...

Difficulty thinking. Thinking requires more effort, is slower, is interrupted frequently by losing attention. Sometimes formulating clear thoughts is not possible (this particular problem is I suspect what is really meant with "brain fog"). The effort of thinking becomes painful over time.

What's the view here on the value of study that searches for PEM in other syndromes and illnesses? It would clarify how common PEM is in other illnesses and syndromes. If it occurs in other illnesses and syndromes, it might help us understand what PEM is by looking at what all these illnesses...

It might just be a convenient way to divide the patient sample into those with more and those with fewer symptoms. But yes, don't we have enough problems with odd definitions in the literature already?

I think what may be happening is that I can't tolerate for long the stimulation of the nervous system that is required to allow me to function. Alternatively, the stimulated feeling may be a response to subtle injury caused by the exertion (maybe blood perfusion problem?)

Aren't all symptoms by definition modifiable by attention? Symptoms are by definition self-reported. Self-reporting of symptoms is well known to be affected by various contextual factors like attention or the interaction with the clinician.

I know what you mean but have some doubts that this has much to do with adrenaline. To me it feels like the body is in a sort of "energy saving and chronic illness" mode characterized by fatigue and increased pain sensitivity. It's meant to limit function and reduce overall activity levels, not...

I've read that some metabolic disorders respond well to treatment if you can find out what the exact problem is. For example, I carry a mutation that can cause phytanic acid storage disease in people who have such mutations in both copies of the gene. It can respond well to a simple diet change...

Why I've started to doubt PEM is only found in ME/CFS: I've now heard of several cases where a person with mitochondrial or metabolic disease had been diagnosed with ME/CFS. In at least 2 of these cases the person seemed to have PEM. In two other cases I'm not sure but misdiagnosis due to lack...

I'm not sure if I should continue to try and find some other disease that could explain my symptoms. If I have ME/CFS then it doesn't make much sense but I can't be certain that I have ME/CFS because there's no reliable diagnostic test. I've also started to doubt that PEM is a reliable indicator...

I only count myself as being in PEM when there is noticable worsening of one day from the next, and on the previous days I did more than usual. Or if symptoms start during or shortly after exertion and persist for days but that is rare because it requires more overexertion. That means when I...

I'm no longer convinced that PEM can be safely assumed to be unique to ME/CFS, or that clinicians can distinguish PEM from tiredness after exertion. Exclusionary conditions seem like a bad idea however. Having ME/CFS doesn't make you immune to other illnesses, some of which might be easier to...

Does anyone wonder whether these testimonials are made up? They don't sound authentic to me because they contain almost no details. A real patient would have a lot more to say about various aspects of illness and recovery. I could say more but I don't want to help these charlatans appear more...

Her website is a typical LP practitioner site with slick marketing https://www.dr-anna.co.uk

I would like to see a cerebral blood flow study during a relapse compared to a non-relapse state.

The released PACE dataset showed that dropout were much more likely in a group of entries at the beginning. The intepretation of this depends on the ordering of the entries. If they are ordered by date of entry into the trial, it could mean that therapy was silently modified mid-trial to reduce...

I often wonder what could be found with in-depth lab testing during my prolonged crashes. They make me feel very unwell and can last weeks or months. I once had a test done by chance during a crash with predominant gastrointestinal symptoms and it found fecal zonulin at levels 4 times the...

The reason PACE failed to show an improvement with exercise therapy is probably precisely because they recruited a large enough number of ME/CFS patients. If I'm not mistaken, a lot of their usual patients that they label as having CFS comes from psychiatry clinics. Or at least it used to be the...