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I hope there will be a follow up that controls for PEM and/or time of onset and/or time since latest relapse etc. in some way. I have argued with neurologists (without success) for years saying that any lack of signal in terms of classical biomarkers for neurodegeneration could be a timing...

I haven't read the paper only the summary. T-cells in the spinal cord and brainstem = ME. Just saying. If this turns out to be true and the findings are replicated by other teams, it’s fair to say that doubters of persistence are now on the back foot. If LC is, to some degree, caused by...

It's not about 'patient vs non patient researchers' though, Snowy, it's about 'knowing vs not knowing' and 'having the energy to implement that knowing vs having no or very little energy to implement that knowing.' Arguing about and criticising research after the fact is obviously not 'wrong'...

Well, that's a very unqualified statement, but, it's not very surprising, I have to say. Where would I get 100 MIL (you came up with that figure) from as a very severe ME patient? The fact that I can't do it doesn't mean it can't be done. The discussion is not very outcome oriented and you...

Of course.

That's a bias re Einstein. Re the 100 Million, it's entirely possible to get that kind of money working in less than 24 - 36 months, and that is exactly the point I am making, you have to flood the zone with calls to get ideas and leads flowing. Whether you or anyone else thinks they are...

You missed the point, it's not that you can't be interested or somehow should not, it's just very likely, largely unproductive in terms of outcome measures.

Yes, let us disagree on this. I do not agree with anything you say, other than that I am sure there are great and good people on this board. I lack the energy to unpack it point for point and I doubt it would change much. In one sentence, though: ME/CFS patients' future is entirely up to one...

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? Personally, I don't think ME/CFS is a B-cell mediated disease, but it might be for some, maybe the mistake that we keep on making is not to subgroup...

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 the issue entirely for many years. A broader coalition with such groups can make sense, but we better be careful. Her inputs in terms of autonomic...

Interesting, at least in German both variant and mutation are used, it literally says "Mutation" on my genetic diagnostic/results, maybe they made a mistake.

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 the phenotype and those with the phenotype appear to be more severe according to many of the MDs I have spoken with.

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 of) EDS and are at least in part caused by some disarray in the ECM, are potentially more likely than others to trigger (via damage to parts of the...

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 could potentially explain the connection between the hEDS phenotype and ME/CFS (which is real; ask 10 MDs who have seen more than a few hundred ME...

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 patient per month, 99/100 MDs will tell you that's bullshit, of course, they will also tell you ME is bullshit. I am inclined to agree with the 99 who...

Pretty sure the authors will be open to suggestions from patients to improve their research!