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Interesting... Edit: and DCC

So that's three papers showing similar findings? And in different parts of the body?

Fair point, after all I am one of those members!

I'd like to say perhaps it is but knowing our luck... But it sounds like it's definitely somewhere Ponting and Co should try for funding. I'm sure they've thought of it so I won't tag him or anything. But it would give me a bit of faith in the world back if the German funders were smart enough...

As ever you sum this up so well. Agreed, which is why if we have a breakthrough we need to hold institutions to account, not just for justice and change for pwME but to shine a light on the wider issues in medicine.

Nobody real cares you mean? PwME and their loved ones don't count in this context. Like they say on Succesion: No Real Person Involved. [To clarify I'm not implying you personally think this] Elon Musk is the richest man on the planet and thus probably beyond the reach of the legal system in...

I hadn't made that connection- that's really interesting!

How are patients supposed to know the diagnostic criteria issues with POTS MCAS etc when charities and advocates and friendly doctors all talk about them with the same legitimacy as MECFS?

I can't think of a better way for Germany to spend the first lot of this funding than to put £20 million towards SequenceME. Is funding constrained to German projects? If not can people who are connected maybe make some introductions and get people talking? The samples are already collected so...

Well, the Wesselyite culpability denial machine is working as intended...

Precicely. I tried to hard not to be one of 'those' patients, did basically no research past the NHS 'chronic fatigue syndrome' page when I was undiagnosed and mild, never claimed to have 4 different diagnoses or stated anything with confidence except that I felt unwell all the time. And I was...

The S4ME Committee should have a copy of this document, in my opinion. It is vitally important to the history of ME/CFS My concern is I don't think it is realistic to expect this kind of seismic change in how patients see their illness and diagnosis without a big breakthrough in research. It's...

Im so tired of the lies. Where is the SequenceME funding, if this is true? It's so obviously bullshit and they should be called out on it at every turn.

What is your evidence for this belief? I find it a rather extraordinary and unlikely claim that so many different diseases could cause post exertional malaise and all of these different pathologies could go completely undetected. What criteria are you referring to here? Surely most sensible...

The thing is that neither is MECFS, at least in the uk. Officially it's in NICE or whatever but doctors avoid diagnosing it and think it's just shit life syndrome or whatever. If I was mild I would avoid mentioning it at most medical appointments for this reason. So all of these people who...

I agree with every concern raised here. However, I think that if we come at patients as hard as JE has been coming at the issue in these threads, it will be percieved as an attack, rightly or wrongly. I think it's a matter of how we approach and what we expect to get out of it. I am of the...

Well that explains why I have been offered nothing except an online fatigue group course so far. Had to postpone my follow up the other day but it wasn't looking so positive for Suffolk ME services from the first meeting.

This is precisely why I think coming down really hard on patients who believe this stuff is a mistake. It's caused by the stigma and is a way to claim a sort of legitimacy and control over their situation. Why wouldn't they believe the doctors who believe them and tell them about all the...

This is the approach that all GPs took with me and that eventually destroyed my life and functioning. That was in the UK 2017-2020

Are there any plans to entice experts in these genes to study them in ME/CFS as with the UCL Ca10 people?