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...
How expensive (for a large-very large WGS)? Is anyone currently trying to get funding for it and could it happen in parallel to the GWAS? Thank you.
That's a very interesting idea. I am not sure though, that ME/CFS cells (we haven't looked at too many celltypes?) behave normally or work as in...
This is more or less the model that many of the "ME/CFS = EV infection" proponents use. I think it's somewhat plausible. What is important to add...
Very interesting study, I thought I would mention that measures to increase volume (saline, desmo,fludro,..) worked well for me in the earlier...
I have measured all of them and GFAP in my own samples (very severe ME), all negative, but again, I did not expect them to be elevated, as I think...
Thank you, I have read this study! I think it's highly underrated how significant these findings could be, we need much larger samples though. If...
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