[UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

DecodeME happened because it was the one very good idea around at the time. It will have involved a lot of work but that is why it happened. I was on one of the advisory boards.

I think you are missing the reality of how much individuals matter here. We have recently had about half a dozen really bright young scientific minds join S4ME - have you not noticed? I am no longer having to hold my own against a crowd of enthusiastic and sharp patients and carers who may have knowledge in a relevant discipline but are not directly involved in the research community. Now I have to hold my own against people actually doing research. And we are seeing papers from groups that know what they are doing.

Things have changed out of all recognition.

 

This is what happened in Norway when we asked for a national competency service. Actually, it was worse because they actively work to undermine good research and to produce harmful research, not just useless research.

 

But this is just a slightly bigger group, consisting of mostly ME/CFS people calling for it.

Where have I expressed scepticism of that figure? What I'm pointing out is that there is a lot in the LC phenotype that isn't ME/CFS, and researching that could easily takeover this proposal.

 

I was lazily relying on this meta-analysis, but are the studies all poor-quality?

If they are, do we have any better studies that would suggest that a low proportion of PwLC have ME?

[Edit: Dubbo came up with 11% or so after other viruses such as EBV.]

 

But don't the studies that look at it look at PEM as a criterion (which you said you didn't have, I think)?

 

There is always a massive amount of work involved in getting a big project like that to fly.
I presume Stephen Holgate was involved as a mediator but he had been doing that for at least ten years already. And that doesn't seem to me to have anything to do with setting up infrastructure without identifying the right people and the right projects. That was what made DecodeME a runner. It was a good project proposed by some excellent people.

 

Sure have but are any in the UK? And if they are, how can they get funding to support themselves if the reviewers at the MRC are still barking?

 

I have not checked the quality of the studies, but based on the descriptions they are not suitable for determining the prevalence of ME/CFS in LC patients.

And it received some pretty harsh critique here and elsewhere:
https://www.s4me.info/threads/the-p...ew-and-meta-analysis-2024-dehlia-et-al.40426/

We have studies suggesting that most pwLC recover within a year or two. And we can’t just assume that it’s high because it hasn’t been proven to be low (not saying you say that, just pointing it out).

 

I think the analysis is probably useless. It looks at the proportion of people with LC who satisfy ME/CFS criteria. But the majority of people who get LC get better by six months or at least a year. If you sample the ones who go on being ill then quite a few may have ME/CFS. If the figure was really 50% it would show up on all sorts of statistics on absence from work etc. There has been an increase in people off sick but not to that extent (assuming that 10% of people who have Covid get a period of 'LC'.)

 

Sorry, I gave the impression that I was addressing you when I was talking about the 50% but you had indeed not expressed any scepticism about it and I was addressing the scepticism elsewhere on the thread in order to lead up to my point about how bringing in LC could bring wider support.

I understand your concerns about the non-ME version of LC taking over but we're starting from a point of having almost nothing to lose. I see such barriers of stupidity to our emerging exciting researchers getting any money.

 

At least one is but Adrian was talking about the lack of progress worldwide.

 

Was it the only one ever, though? The MRC have funded utter rubbish (PACE) while funding hardly any biomedical stuff, for decades. Were there really no other runners?

 

Don’t we need both? Good people with good ideas and good people working hard to get the funding and wider support? Neither alone solves anything, surely it is great news we are finally seeing both come together?

 

Thanks, I'll have a look. I may be being too casual about this!

I wonder if most PwME recover within a year or two. We can't, of course, assume it's high because we can't prove otherwise but this whole thing is really underlining what a basket case our figures are in general.

 

I share this concern partly because it already mentally shoehorns ME/CFS into a 'post-infective illness' pigeonhole. That will immediately bring in the post-infective illness fast-followers that are so evident on X. ME/CFS does have an important link to infection but the last thing we want is researchers who think in these mental pigeonholes.

 

In the ten years I have been watching ME/CFS research DecodeME stood out as an order of magnitude more worthwhile than anything else. Maybe two orders of magnitude. I have never been sure that any other projects should have an unequivocal "fund" response. I have seen some other quite good studies recently but they have not come through to the public consciousness yet and none of them are a no-brainer 'fund it' like DecodeME. Most of the stuff that we have discussed, at least until the last year or two, I wouldn't expect to get MRC funding.

 

Yup!

 

I'm less keen on a general post-infective illness group because it will be much wider and include things probably very un-ME-like.

As far as whether we would be wise to join forces with Long Covid, it seems to depend rather heavily on what proportion of PwLC have ME, and we seem to be all over the map there.

Do we know that most people who get non-Covid ME don't get better by a year or so, though, and aren't just like ME-type PwLC in that regard?

The proportion of PwLC who have ME seems to be an important question to resolve for all sorts of reasons. How could it be done? It seems weird that it hasn't been done well, if all those studies in the meta-analysis are duds.

 

We do. The 50% figure comes from biased samples, either specialist clinics or social media groups, who are likely to be more severe. And the massive numbers come when you apply the 50% figure to the ONS data.
It is the ONS data itself that undermines the 50% claim. Because the ONS studied also asked people if their symptoms limited their daily activities not at all, a little, or a lot (which is the SF 36 approach). Most people say their long Covid limited Their daily
activities either not at all or only a limited amount and that means they would not meet any definition of me/CFS the time I’m aware of.

You can make a case that the 50% figure applies to those who are “limited a lot” – but that’s a much smaller proportion of long Covid With me/CFS, and much smaller numbers overall.

I’m sure that Action for ME know this, I’m not sure why People are pushing a number that Doesn’t add up, other than it is a big number.