UK Action for ME petition: 'Equity for ME' asking UK governments for equity of recognition and research funding with long Covid. closes 26th Nov 2021

https://twitter.com/user/status/1422912707611832325

 

I don’t like to be too negative but I have some concerns with this:

1) “Less than 4% of people with M.E. are able to access specialist M.E. services due to a lack of provision” The problem is with the quality of the services. I don’t want more access to bad services. I want universal access to high quality services, integrated with high quality research centres.

2) “Less than 0.03% of research grants from the UK government are awarded to M.E. research”. Again, it’s not just about quantity it’s about quality. Most UK public funding has gone to low quality research. We don’t want more of that.

3) “While we are pleased to see considerable funding for research and healthcare support for people with Long Covid, it has shone a light on the lack of investment into M.E. and the lack of services and treatment available.” I’ve not studied them all in detail but I have not been impressed with the quality of the LC studies that have been funded, or the services for people with LC. My impression is that if the new NICE ME/CFS Guideline is similar to the draft, anyone who meets the diagnostic criteria for ME/CFS following Covid-19 will be less likely to be subjected to CBT/GET if they are diagnosed with ME/CFS instead of Long Covid.

4) From memory, the NIHR has spent, or agreed to spend, about £20million on LC research (mostly low quality). That is nowhere near enough. The NIH in the US has pledged to spend $1.15 billion.

For these reasons, I’m not sure that I want to ask the “UK Government to commit the same level of research funding and recognition to M.E. as we have seen with Long Covid.” I would like to see far more funding for both ME/CFS and LC research, and for the quality of research and service provision to be far higher for both diagnoses.

 

Well said @Robert 1973. My first thought is that requesting parity of funding for ME and Long Covid just because there is an overlap in the two conditions would sound to anyone outside the field at best arbitrary and at worst ‘sour grapes’. Does it play into the narrative of those dreadful CFS activists moaning again?

I have not signed this petition so far, though ultimately probably will, because anything that promotes more debate on this is a good thing. However it continues to be worrying that Action for ME is still, though well intentioned, missing the mark.

There may be good Long Covid research out there, but I suspect in the rush to publish much of it will be just lost opportunities. Increasing research funding, although vital, by itself is not a guarantee of useful results, or even a guarantee of avoiding bad research resulting in patient harm.

Although a long term imbalance in funding for Long Covid and ME research would be an injustice, there is an argument given we are currently in a pandemic there is a time limited opportunity for prospective research that justifies such an imbalance, though any research that ignores the overlap between ME and Long Covid is likely to be yet another lost opportunity. Certainly much of what I have seen seems to have missed the opportunity of building on previous ME research and avoiding repeating past mistakes.

Currently what is needed is not just a knee jerk upping of funding for ME (though I would take it if it is on offer) but a better system for fairly allocating research funding in a way that recognises disease burden, that takes into account current opportunities and that promotes good quality research.

 

Is there a risk that such a petition could be counter productive? If the powers that be decide Long Covid and ME are more or less the same thing, could they think ‘as we are spending so much on Long Covid research there is no need to spend on ME’?

 

I have not signed it.

The quality of research for Long Covid currently is pretty poor, lots of BPS influence and themes. We don't want more of that; none is better! The "recognition" given to Long Covid (in the UK) is currently to fund the same kind of flawed research that has been seen not to help - and to harm - patients with ME/CFS. Not the kind of "recognition" anyone needs. This effort seems to function on the premise that Long Covid has been treated well, which I disagree with. They could have learned from the ME/CFS case and chosen not to perpetuate nonsense onto Long Covid patients. So far I'm seeing too many moves in the wrong direction. It has been difficult to see this happen, especially as I have also become ill with Long Covid.

I would like more focus on good science, quality research, and quality services that will actually help patients, as we have seen what happens in the absence of those.

 

I share the concerns raised by others.

I know it sounds perverse but I would rather money not be spent at all if it's spend on the wrong thing. Expenditure on a pointless or poorly designed study allows the illusion that "something" is being done while conveniently ignoring that sometimes "something" , especially if it's the wrong thing, can make matters worse rather than better.

I am unsure about equating spending on LC to ME, though there will of course be cross over. Money spend on studies following pwLC tracking who recovers and who doesn't, possibly repeat testing if we can figure out what to look at, might give us more information about what happens to patients who fail to make a full recovery. This could be very useful for future outbreaks of infection & might be helpful for pwME or at least those in the early stages.

When it comes to services the last thing we need is more of the same.

 

I have signed it on the grounds that the petition asks for the same level of research funding and recognition as long covid, not the same research.

I don't think this will be sufficient funding but it is further on than we are now.

I think the 'recognition' point is relevant because long covid is recognised as a biological post viral illness, not a psychological illness, which again moves us forward a step.

From what little I know, there are insufficient long covid clinics so I don't think their world is totally rosy but I think they are further forward in terms of acceptance and recognition of the need for research funding.

 

I don't think that's universally the case I'm afraid.

I think certain parties are already gearing up the BPS machine for those who fail.to recover from LC and it is certainly possible that if they haven't pulled their socks up and recovered within a year or so they'll find themselves at a fatigue clinic pacing up.

 

It will be that distinction between "disease" and "illness" again. They will recognise the disease, but may not recognise all the illness which ensues. Aetiology is not important , as someone once said.

 

I agree the LC group are going to need to be careful about what 'treatments' are developed for their illness and that they are at risk from 'certain parties'.

But currently I think they are recognised as being physically ill in the news media etc, examples being the number of prominent figures who have come forward to talk of their condition, which is not often the case with ME. Fauci and others have given prominence to their view of long covid as a post viral illness.
I do think they are at risk however, maybe even more so if the BPS clinics for ME are closed/ reallocated/ whatever.

 

So this in part my be an indirect ‘recruitment’ drive, in the same way as if you sign a petition sponsored by a political party you ever after get bombarded by emails from that party?

 

That's really an issue. Most of the LC "research" funded so far in the UK is junk, frankly barely qualifies as research. This has to come with a call for increased standards in the area of chronic illness research and clinical provisions. Not just more, but better. And to emphasize: not 10% better or even 50% better but 10x better just to begin with. In fact the current crop of clinics, both LC and ME, can basically be pointed at as the example for mediocre standards that need to be raised massively.

Which is a hard sell, granted. It basically comes with the message that: you have all been incompetent so far. But it's the simple truth. If they want to help people, this is how. If all they want is to pretend they're helping and don't care about anything else, by all means they can continue with the incompetent mediocrity. It's not as if it would change anything if similar amounts went to prop up the status quo, in fact it would probably be worse.

 

That's already what the NIH are saying so it's a safe bet.

 

I am glad they aren't spending more money on it. It's dangerous. Do we really want more PACE studies, forever?

 

And that could backfire badly - Paul Garner being an example.

We know the majority of people will recover in time & most of those that will do so will recover in the first year.

By year 5 recovery for those still ill is very unlikely.

We're approx. 18 months on from the start of the pandemic in the UK so it's very early days. Some of those who are currently doing a good job publicising that LC is real and can be devastating will recover and may well then attribute their recovery to something they just happened to be doing at the time and then go and publicise that.

We've been here before with people who had the public ear even when they just experienced a remission. I'm thinking of Esther Rantzen's daughter for example. There were a couple of different recovery stories over the years.

As more and more people recover from LC, I reckon the narrative will start to change. Especially if we aren't properly monitoring people and trying to find out what is actually happening to them.

I really hope I'm wrong.

 

I hope you're right. I thought that public perception of Long Covid was that it's more "physical" than ME.