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Every time the disability of ME/CFS is portrayed as people who were once physically active in life (often athletes) who can no longer reach the physical performance that they used to have. In severe cases, it's housebound or bedbound patients who "struggle to take a shower" or "can't go out for...

Once we have figured out who we would like to have research the illness, how do we get them on board? I don't think waiting for them to read this forum will do much good.

That's true, but it seems unique to certain pathogens and those patients have other signs of pathology. If you are suspected of having Lyme disease they don't even do PCR because they know it will probably be negative, they do antibody testing and look for clinical signs. But the same cannot be...

The problem with this kind of hypothesis is that ME actually makes you a lot more disabled than illnesses where we see the infection winning. So how come that in the event of a stalemate, without obvious tissue damage, without the pathogen even being detectable in the blood, you end up with much...

I have evidence of HHV7 in the blood but not in the CSF, interestingly. But there are no drugs that can effectively eliminate these viruses. So i guess there's nothing to do but wait.

I think this is the best chance we have at fast tracking the disease. Medical researchers spend their entire lives studying a single hypothesis they arbitrarily picked and when all is said and done you still don't even know if it's true, let alone how to cure it. When you have thousands of...

I think that's definitely a possibility, some kind of immune activation in the brain would make sense. It can influence the periphery enough to cause symptoms but without causing obvious damage - like IBS, brain gut crosstalk can cause severe symptoms but without major abnormality being found...

I asked gpt-3 how to figure out the cause of an illness with fatigue, cognitive impairment and unrefreshing sleep (i forgot PEM, whoops). Here's what it told me: Sure, here is a list of some of the potential research methods and approaches that could be used to try and identify the cause of...

It is dangerous to paint functional medicine doctors as the heroes of medicine. They are usually quacks that run a large number of nonsensical tests (often from private labs they get a cut from that give false positives) and prescribe nonsensical treatment regimens. If the story is true the...

@Jonathan Edwards Thoughts on the innate immune system being stuck "on" in ME? Does the current evidence allow this or would we see abnormalities the patients do not have? I too feel on a subjective level that it makes sense but i would think we would have figured it out by now if it was that...

I might be wrong but i think reddit tends to attract certain kinds of people. If you look at r/science there's a large amount of very low quality psychology/sociology papers being posted daily. The people who post/comment from what i've seen over the years also seem to generally be very...

Well, yes, people only care about power. It is very obvious. Usually a patient is powerless in front of a doctor, and this is especially true with an illness like this one, you have absolutely no leverage so they will subtly spit in your face every chance they get. Sometimes you meet empathetic...

Sorry if i didn't explain myself properly - i meant to ask why nobody is doing what NIH is doing right now with the ME/CFS intramural study. The tweet by Brian Vastag says it has never been done before and i think that's not acceptable.

Thank you for sharing and for your thoughtful contribution. I wasn't specifically referring to NIH, but to medicine in general. You say NIH doesn't do early stage translational research, fine. Well, why aren't universities doing it then? You mention private labs. Why should private money fund...

It's especially bizarre considering all the talk about "personalized" and "precision" medicine. It makes me wonder if a large portion of medicine is just pure marketing BS to set up pump & dumps for VC backed startups and secure funding for intellectually lazy and corrupt researchers.

In the last tweet Brian Vastag says this: "One more thought: This study was ambitious & very large in terms of data generated. I don't think there's any precedent for using 30+ advanced research techniques in a huge, hypothesis-generating fishing expedition to try to understand the biological...

That's the thing, doctors don't change their opinion based on what the public thinks, they call the shots and don't listen to anyone except themselves. Change has to happen from within, you can't expect to be able to put pressure on them from the outside. I don't know how to make that happen though.

I've said it time and time again, the attitudes people have towards this illness is caused by doctors. Society simply listens to the professionals. When you talk about these illnesses outside of patient niches (this forum, twitter, etc) you will see that 99% of doctors go like "duh of course...

Exactly. If ME scientists and clinicians don't start doing actual science we do not have much hope of getting a treatment any time soon. Recently i was watching a presentation from a renowned scientist on CAR T cells cancer therapy and something he said stuck out to me. They don't know why...

Isn't Patterson the guy who claims to have cured something like 6000 patients yet not a single anecdote was to be found anywhere? Surely institutions are not falling for this garbage are they?