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This is a good example of why we need to study tissues more in ME. Everyone keeps looking at the blood and we never get anywhere. Studying gastric biopsies in ME patients with severe stomach symptoms, for example, would be a good idea. Nobody has done it yet.

I will be decades before something like this is used for ME. it can't even be used on humans yet, or live animals because it's too dangerous. It will probably start being used on autopsy brains, which is not promising because not only does ME get no funding but ME brains are also very hard to...

I've interacted with dozens of neurologists over the years and i haven't met a single one who thought FND was a legitimate illness that required research or figuring out how to treat. It's always a "send the patient straight to the psychologist and it's done" kind of deal. In some cases, the...

I find it interesting how researchers like Mr. Prusty and Mrs. Proal make so much noise about herpes viruses, but when I contacted them about my chronic HHV7 detectable in the blood they showed zero interest. It is kind of ironic because the main reason why nobody in the academic world takes...

This is not surprising at all. A medical AI is trained on publication data so it will repeat the same lies doctors tell themselves. The proper way to train a medical AI is to have it interact with patients and to give objective data stronger weight. A sort of inquisitive algorithm that tries to...

I appreciate your optimism, but it's much easier said than done. I cannot think of a way to achieve this without requiring an unreachable amount of effort and resources (for a person as sick as i am, anyway).

This is an enormous problem, bigger than people realize. I have very big displeasure with all ME organizations for the reasons you showed but i don't voice it because i have no energy, resources or leverage to make something better happen so my opinion has no value really. Still, I'll write my...

I've tried mito supplements many times (carnitine variants, Q10 etc) and they make me distinctly worse. Fatigue and brain fog increased significantly. I've seen some patients saying they help, i wish i was one of them.

I've seen something like 50 doctors and was hospitalized (neurology, infectivology, rheumatology departments) a few times. Sometimes during outpatient visits doctors had med students sitting about. So I've seen doctors interacting with eachother and with med students a lot. Every time I had the...

This is very true, and it's because the incentives are misaligned. Researchers have every reason to drag things out forever and no reason to reach a conclusion. They have no stake in the game.

The idea behind the study is good, the problem is that most people at NIH act in completely bad faith when it comes to ME.

Posts moved from USA: The RECOVER Initiative How much do you wanna bet a couple years from now the NIH will be regretfully telling us how they don't have enough money or staff or patients to fast track a replication of Nath's findings in the intramural study on a bigger cohort, and they really...

Calling Crawley's papers "science" is a bit of a stretch isn't it? These purely political answers will only earn distrust from patients towards the association and make all their efforts a waste of time, energy and money.

Have the ethical boards considered that maybe, just maybe, spewing out one unblinded study after another for decades, luring desperate patients into trying dozens of harmful drugs that don't work, might in fact be more unethical than doing proper RCT studies? If the researchers have limited...

Maybe I'm not understanding, but this is completely wrong. RCT is often the only way to know if a treatment works and if the trial is large enough and the results significant you can trust that it does work. You can try asking anyone who works at a hedge fund and analyses pharma stocks for a...

I don't know about you, but I've tried about 50 drugs/supplements from trials like this one and none of them worked. Trials like these are literally worthless. Yes, they should jump to RCT right away, if not simply just do nothing, it's better than luring patients into trying stuff that doesn't...

The core issue here is the failure from doctors to adequately categorize patients. "Autism" is extremely heterogeneous, some of the people could clearly use a treatment, others are fine with being who they are. The ones that make the most noise, of course, are the high functioning folks. The low...

Thanks everyone for your replies. I'll try some things and report back if they work. I don't have SIBO or anything "obvious" like that. MCAS maybe but it's hard to tell. I might look into something to calm the mast cells in the gut

When i saw the #teamClots stuff on Twitter and the way they were marketing this whole thing, i would have bet money that it would turn out to be a scam with garbage tier science. It is unfair and dystopian that patients keep getting exploited like this, and nobody cares. Almost nobody is even...

As my illness gets worse with time, i become intolerant to more and more foods and it has gotten to the point where aside from non processed meat, fish, some vegetables and gluten free pasta there is very little i can eat. I'm intolerant to at least 90-95% of the foods that exist and that number...