The way forward then would be better standardisation.
Can you give us an example for the kind of mistaken procedure that would lead to SFNP in 4 mice but not in the other 4? How would that happen?...
The organisation that this lady represents has a bad track record in terms of ME/CFS more broadly and in particular in terms of PEM. They ignored...
Interesting, at least in German both variant and mutation are used, it literally says "Mutation" on my genetic diagnostic/results, maybe they made...
I think your opinion on the topic is widely disseminated. :) Let me just add that hEDS is not exclusively about hypermobility.
The pinboards you are referring to, is there an accepted term for them? Any literature? Thank you!
I doubt the MDs I have spoken to even know who that is, I go with the MDs on that one. Not all ME is hEDS, but there is an overrepresentation of...
Thank you, very interesting. I think what the new paper might imply is that some people with phenotypes that might resemble (or are unknown types...
Maybe it is the ECM after all? https://www.cell.com/cell/abstract/S0092-8674(24)00638-X Interesting development!
Of course, it’s the ECM. This might be one of the missing links we have been waiting for. For years, I have been looking out for research that...
These effects are likely due to placebo or people getting better by themselves, the dosage of IG these patients received was miniscule, 3-5g per...
Pretty sure the authors will be open to suggestions from patients to improve their research!
That's a VERY important point, I think there are ways to circumvent this issue, granted so far no org has found good structures/means yet.
That's exactly the point: no amount of criticizing bad research will stop it from happening. It happens for ALL diseases but in relatively lower...
I agree with basically everthing you say, but, if capacity and resources are a rare good, one should be as conscious as possible/aware of the...
All good, but that is a complete misrepresentation of what I am saying. I am not saying it has no value, but that relatively speaking, too much...
Yes, I disagree, telling laymen to invest their little energy in highly complex matters that they will not solve is not optimal to put it mildly....
I understand what you are saying, but in most cases, 'criticizing bad research' on a patient forum or a blog will not improve it—not even the next...
Yes, not easy, but it's the way forward. We will not reach a tipping point for ME/CFS unless there is significantly more investment and engagement...
Could measures/chances to secure further funding be improved by (crowd)funding to hire people for writing grant applications, do political...
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