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We are right even though we have been proven wrong a thousand times before, but this time we must be right because there is no evidence that we are wrong. Oh, what's that, you are saying there is no evidence yet because we simply just ignore any and all complaints and we are the ones who...

I just had a funny (tragically funny) thought about Neuralink implants. I have just come from a minor surgical procedure that left me with a permanent problem and a new disability. From what I can tell, it's not because the doctors fucked up but rather from my connective tissue not healing...

I think the whole psychotherapy BS started as giving difficult patients someone to talk to (not necessarily in a useful or productive manner) so they wouldn't clog up the areas of medicine "real" patients need to access. So, a social tool rather than a medical one. Eventually, governments...

That's good, but if we don't make replication happen, it will be ignored and forgotten like every other small ME study to date. No neurologist will look at this and think "hmm, this seems significant we should try to replicate it". They only care about visible MRI lesions and focal symptoms. ME...

I have to say I'm not very surprised by these developments. Very few doctors want to discuss ME in good faith or believe the illness could make you housebound, let alone so sick that you need tube feeding. I've seen many dozens of doctors and I'm not sure a single one of them would have given me...

Ah yes, the usual "this symptom is not a big deal and it's treatable anyway because i say so". No evidence required. Meanwhile lives keep getting ruined.

The discrepancy that J.E. points out, that ME patient seem to be treated worse than patients with clear cut mental illness (in this case Anorexia Nervosa, or any illness where the patient might end up malnourished) in my opinion could be explained this way: Mental illness has historically...

Maybe it's just me, but I feel like OMF has lost a lot of momentum compared to the earlier years (despite having more money than ever). It feels like the research coming out is the bare minimum to show they are doing something. They may be doing a lot more behind the scenes, but if they don't...

As my illness slowly worsens over the years, i have gotten more and more food intolerances. At this point, i cannot eat most foods. I also often get a very uncomfortable sensation in my stomach (typically when i wake up) that i can only quell by eating. I eat a lot, but I've always been...

I think this is the reason. The main purpose of psychiatry/psychology is for crazy people (= people with complex illnesses) to have someone to talk to so they stop complaining or otherwise causing damage to society. A containment zone of sorts. A political tool, more than a medical one. A...

I have seen you mentioning this often - if all genetic studies (including decodeME) turn out completely negative, what kinds of pathology would that suggest?

I've always thought this too. I remember reading a study about the possible connection between the persistence of toxoplasma gondii in the brain and schizophrenia. The author's claimed that common antipsychotics (might have been olanzapine they referred to but i don't remember exactly) had an...

A lot of people have been saying this, for decades, but no study has ever been done where they try, let's say an immune drug, an antiviral drug and a mitochondrial drug(or supplements) together and the patients get better. No evidence whatsoever for this statement.

IMO the fact that the NIH is not doing GWAS for long covid shows they are not taking it seriously. It is such an obvious thing to do and the money is literally there.

"I asked Nath how the early end of the ME/CFS study had affected it? Nath replied that the sample size was smaller than what he would have wanted but that they’d studied everyone extensively and collected a lot of data on them. The studies were probably going to get critiqued in the journals...

@Subtropical Island beautifully written indeed. Thank you for your contribution. True, but i don't blame them. It should be medical professionals to set off alarm bells instead of abandoning patients. By "being loud" i meant something as simple as influencing existing orgs like MEAction...

I am severe/housebound, the reason i described it as a mild inconvenience is that with the right kind of accomodations a fulfilling life is still entirely within reach. I realize someone with a spine injury stuck in a wheelchair wouldn't define it as a mild inconvenience but the extreme level of...

Thank you all for your anecdotes. It might be that cognitively impaired patients have little voice as the cognitively intact ones run the show. It seems that even in other illnesses this is the case to an extent. Perhaps we could find a way to come together and push for a change. I think that...

I tried artemisinin (which is pretty similar to artesunate) and it didn't do anything for my HHV7. Then again, acyclovir didn't work either.

I know that it has been mentioned a handful of times, but if it was so disabling the patients would be making a lot more noise. Like, it would be a popular topic of discussion at least as much as the PACE trial. I have stalked long covid communities for a while (and of course seen countless ME...