United Kingdom: News from #There for ME

[Jonathan Edwards]

I see an irony that some of the people who are insistent that we distinguish ME/CFS from less specific fatiguing illness also go for bumping up the number estimates - which is pretty much bound to muddle in the less specific cases. And if the less specific cases are relatively mild and tend to improve then rehab-back-to-work approaches will seem to work well on them and then we are back to where we were.

I suspect 0.4% is a realistic number. I am also quite sure that there will not be any precise number, any more than there is for RA.

 

[V.R.T.]

I doubt that most GPs would be reporting that 2% of their patients have ME/CFS.

To play devils advocate, most GPs wouldn't recognise MECFS if it jumped up and bit them on the arm.

 

[Sean]

Until we have more specific and reliable measures there is little value in chasing increasing accuracy (specificity and selectivity) at this point. Somewhere around 0.5% is good enough for now.

Yet another round of criteria development studies and workshops based on the current limited knowledge is not going to help, and there is a danger that it will just play into the hands of those whose authority is based on a lack of firm knowledge, i.e. the psycho-behavioural crowd.

Spend the money on better basic research, I say, before any more redefining.

 

[Suffolkres]

To play devils advocate, most GPs wouldn't recognise MECFS if it jumped up and bit them on the arm.

Or elsewhere in the nether regions. ...Hell, the Underworld, or any place of darkness or eternal suffering.....!

 

[NelliePledge]

Or elsewhere in the nether regions. ...Hell, the Underworld, or any place of darkness or eternal suffering.....!

Thanks for the laugh

 

[Hutan]

To play devils advocate, most GPs wouldn't recognise MECFS if it jumped up and bit them on the arm.

Yes, but they are even less likely to be properly recognising it if they believe that 2% of their patients have it. They will be including all sorts of people with fatiguing conditions.

And, on the other hand, all it takes is for a GP to say something like 'I have 1000 patients and I only have 3 people with CFS' (my doctor said something similar) for the credibility of ThereforME to be shot down, because the GP's data will be seen as credible. Whereas assumptions like '50% of Long Covid is ME/CFS' are very easy to poke holes in.

There's no great upside to inflating the percentage figure to 2%, and there is quite a lot of downside.

 

[MrMagoo]

Yes, but they are even less likely to be properly recognising it if they believe that 2% of their patients have it. They will be including all sorts of people with fatiguing conditions.

And, on the other hand, all it takes is for a GP to say something like 'I have 1000 patients and I only have 3 people with CFS' (my doctor said something similar) for the credibility of ThereforME to be shot down, because the GP's data will be seen as credible. Whereas assumptions like '50% of Long Covid is ME/CFS' are very easy to poke holes in.

There's no great upside to inflating the percentage figure to 2%, and there is quite a lot of downside.

Wow your doctor doesn’t understand averages?

 

[BrightCandle]

Wow your doctor doesn’t understand averages?

The typical GP with ~6000 patients in the area ought to be dealing with about 30-45ME/CFS patients. Almost none of them have remotely near that count. As we have seen with the digital records the mode that GPs have is actually 0.

 

[Chandelier]

From Bluesky:

We’re looking for someone with ME/a carer to a PwME who would be interested to write a short piece (500 words) for our @thereforme.bsky.social blog about their experiences of/challenges with social care. Ideally looking for someone in Wales or NI - but can be flexible!

It’s for a blog that will include experiences from several PwME across the UK - aiming to highlight the challenges people are facing. If you’re keen, drop me a message!

 

[Binkie4]

Karen Hargrave | Substack

substack.com

"We’ve had plenty of reasons to reflect lately — in our #ThereForME team and the wider world: we have a new Prime Minister and Health Secretary, a couple of weeks ago it was the first anniversary of the Final Delivery Plan (an anniversary that passed largely unnoticed), and our #ThereForME team celebrated our second birthday.
There have been notable changes in the two years since we founded #ThereForME: we’ve seen growing cross-party recognition that things need to change for people with ME; studies like DecodeME have blazed a trail that has begun to reshape ME research; and we’ve seen noticeable shifts in how the media has covered ME.
But in other ways, far too little has changed. The central issues that inspired our work remain stubbornly persistent: NHS care for people with very severe ME remains at best absent, at worst unsafe; research remains underfunded; treatments remain out of reach.
What does the future hold for people with ME — and crucially, where must ME advocacy go next? The political landscape has changed, and if we want different outcomes, our advocacy has to evolve with it.............

A golden rule for advocacy is that, if you’re not getting the outcome you want, you’re not going to get far complaining that decision-makers aren’t getting the message. Not getting what you want doesn’t necessarily mean you’ve been getting it wrong, but it should always prompt recalibration. Why isn’t the message landing? How do we need to pivot?.............."

 

[Robert 1973]

Karen Hargrave | Substack

substack.com

From the blog:

There are many reasons why change for people with ME remains so elusive — many of them structural. But there’s one unavoidable fact that sits across it all: many of the changes we want — research funding, medical education, improvements to NHS services — cost money. And right now Britain is short of cash.

I’m not convinced that this is a very significant reason for lack of ME/CFS research funding. The largest grants for biomedical ME/CFS research have been for Decode and Sequence which have both been awarded when the UK Treasury has been struggling to balance the books.

The problem is and always has been that ME/CFS isn’t getting anything like its fair share of the research budget relative to disease burden. I think the argument needs to be more focused on that rather than implying that the government needs to find extra money, on top of its current budget for medical research, in order for ME/CFS to get more. In other words research into other conditions needs to get a smaller share of the total pot (whatever it may be) in order for us to get our fair share. As an advocate, I wouldn’t put it that way, but that is the mathematical reality.

Where there are gaps in the evidence base, we need to fill them. Where there are gaps in our understanding, we need to bring in experts. When our most recent assessment of the economic impact of ME is over a decade old, and pre-dates the pandemic, are we really so surprised that our messaging isn’t breaking through?

I don’t disagree with this but the problem has always been finding the right experts who get the facts right. Experts who promote falsehoods or unevidence theories as facts, whether BPS or biomedical, are not helpful to our cause, but it can be very difficult for advocates and patients (including me) to accurately assess the reliability of non-BPS experts views, particularly when they have COIs pertaining to research or private practice.

My feeling is that we should be ultra conservative with estimates of prevalence and disease burden (as with promoting unevidenced theories an interventions). It’s tempting for advocates to inflate figures to emphasise the scale of the problem, but that risks undermining credibility. Even using the most conservative estimates of prevalence and costs, research funding is nowhere near proportional to disease burden relative to other conditions. That is the message I think we should be trying to convey.

Crucially, however, the strongest case for investing in ME isn’t only the economic cost of ignoring the issue. It’s making the case that investing in ME research, treatments and care will help the government solve problems it is already trying to solve.

From social care to welfare reforms, we need to think creatively about the government’s priorities. We need to make the case that investing in tackling ME can be part of the answer. Our new government has spoken about preventing societal challenges by intervening earlier. If that’s where the government is focused, that’s where our advocacy needs to be too.

The risk with this strategy is that there are BPS advocates who still claim to be able to solve these problems – like SW telling the DWP that benefits often make ME/CFS patients worse. For years New Labour had more money than it knew what do with but still funding for biomedical ME/CFS research was neglected, benefits for people were squeezed, and services were not fit for purpose.

If prevalence figures are inflated this gives the “experts” the opportunity to blow holes in those figures and convince the government that cutting benefits and rehabilitation will reduce costs and get people back to work.

I hope this doesn’t come across as too negative or critical. I am grateful to ThereForME and I think they have done some very positive work. I agree that Burnham may be receptive to calls to do more for people with ME/CFS – and ThereforME may be best placed to get the messaging across to him. I just hope that they will get the messaging right.

Writing this I’m mindful of Andy Burnham’s recent announcement that he will meet Archie Goodburn after his plea for more research into brain cancer: https://www.bbc.co.uk/sport/articles/c5y4pp7q1wko

I don’t know the details well enough to know the strength of the case for increasing government investment into brain cancer research relative to investment into other medical conditions but I do recall that the government announced an extra £40 million investment in brain cancer research in the wake of Tessa Jowell’s death: https://www.tessajowellbraincancerm...in-tumour-research-as-part-of-40m-investment/

I wonder if we and ThereForME can learn anything from Archie Goodman’s emotional appeal to Burnham. Unfortunately, with ME/CFS there is always the concern that if one individual’s appeal were to go viral, there is a high risk that the messaging would be unhelpful.

Maybe nothing of substance will come of Goodburn’s meeting with Burnham and/or maybe the lesson will simply be that sometimes random things happen which lead to memes, which may or may not result in just and substantive change.

[edited typos for clarity]

 

[Jonathan Edwards]

I don’t disagree with this but the problem has always been finding the right experts who get the facts right.

I agree. Bringing in experts is a recipe for more of the same. Thee are no experts in this field, precisely because we know so little. Sometimes one has to sit down and think things through oneself - and the ME/CFS community does pretty well on that.

 

[bobbler]

Article: There are many reasons why change for people with ME remains so elusive — many of them structural. But there’s one unavoidable fact that sits across it all: many of the changes we want — research funding, medical education, improvements to NHS services — cost money. And right now Britain is short of cash.

I’m not convinced that this is a very significant reason for lack of ME/CFS. The largest grants for biomedical ME/CFS research have been for Decode and Sequence which have both been awarded when the UK Treasury has been struggling to balance the books.

The problem is and always has been that ME/CFS isn’t getting anything like its fair share of the research budget relative to disease burden. I think the argument needs to be more focused on that rather than implying that the government needs to find extra money, on top of its current budget for medical research, in order for ME/CFS to get more. In other words research into other conditions needs to get a smaller share of the total pot (whatever it may be) in order for us to get our fair share. As an advocate, I wouldn’t put it that way, but that is the mathematical reality.

I'm glad that you raised this. I think there are indeed big structural things on the list of what needs to be sorted to move things forward for pwme and ME/CFS in general - and many of them start with the 'having the conversation in a way that isn't top-down ONE WAY' and by top-down I include charities and all with a voice.

I know this sounds as if it is asking for input, but is it really?

I'm aware of the background/area of expertise being more used to the political day-to-day than I might have lived in and so these terms are the bread and butter, trying to do a summary of the 'situation report' but it needs unbundling better as it's coming off instead as strategy has been decided/limited (and then asking what do we do). I think it might have been written on the fly somewhat rather than being something of many months consideration by different independent thinkers inputting (ie a process that isn't groupthink trying to come up with something but a lot of people happy and welcomed to disagree).

I'd normally say they might be right in looking at what the newspapers and political discourse says on economy and money being tight 'and so it is tactless/not the time to be hands out' type thing - but recent news items seem to even de-bunk that convention.

I do agree there is rarely a good time to 'just ask for money' even if it is in the indirect sense of saying how badly done by we've been - without having some clue and plan of what it will be spent on and why.

Firstly because money being spent on stuff that makes those/things harming us more embedded is really bad news.

Secondly: noone should be just doing that in almost all circumstances - that's not how you do it/protocol (you put a case), it reflects badly on us and then plays into all the tropes on us too. But also any air time is a chance to get the issues/situation/learning head which is what we need (for people to be educated on what it is vs isn't as a situation step-by-step) and we keep missing even getting step 1 done nevermind building on that if we don't have an ask mapped out.

Thirdly: a heck of a lot of money is being spent on bps people instead of pwme, I've spent years pulling people up on calling bps stuff 'cheap' when I'm pretty sure there has been a huge amount of money going into the bps kingdoms, all of which was sold on myths of 'cost effective' that never rang true, because they were based on fibs about '11/10 GP visits are MUS' type one-liners and their cost effective didn't involve finding something effective then seeing how much it cost.

I do think we are really rubbish as a landscape and community at overall moving forwards and not going for noise and attention over clear messages getting heard and thinking of something that will work being the focus and having a plan on what to ask for etc.

I say that not saying everyone is rubbish, but we've got a lot of disadvatnages that are unique including the parasites that have something they'd and probably do try and sell at anything and everything being happily believed and dumped on for conditions like ours whilst ignored for what they are in place of real stuff for other 'serious' illnesses. And the reason isn't that those illnesses directly debunk those pretenders.

 

[MrMagoo]

I'm glad that you raised this. I think there are indeed big structural things on the list of what needs to be sorted to move things forward for pwme and ME/CFS in general - and many of them start with the 'having the conversation in a way that isn't top-down ONE WAY' and by top-down I include charities and all with a voice.

I know this sounds as if it is asking for input, but is it really?

I'm aware of the background/area of expertise being more used to the political day-to-day than I might have lived in and so these terms are the bread and butter, trying to do a summary of the 'situation report' but it needs unbundling better as it's coming off instead as strategy has been decided/limited (and then asking what do we do). I think it might have been written on the fly somewhat rather than being something of many months consideration by different independent thinkers inputting (ie a process that isn't groupthink trying to come up with something but a lot of people happy and welcomed to disagree).

I'd normally say they might be right in looking at what the newspapers and political discourse says on economy and money being tight 'and so it is tactless/not the time to be hands out' type thing - but recent news items seem to even de-bunk that convention.

I do agree there is rarely a good time to 'just ask for money' even if it is in the indirect sense of saying how badly done by we've been - without having some clue and plan of what it will be spent on and why.

Firstly because money being spent on stuff that makes those/things harming us more embedded is really bad news.

Secondly: noone should be just doing that in almost all circumstances - that's not how you do it/protocol (you put a case), it reflects badly on us and then plays into all the tropes on us too. But also any air time is a chance to get the issues/situation/learning head which is what we need (for people to be educated on what it is vs isn't as a situation step-by-step) and we keep missing even getting step 1 done nevermind building on that if we don't have an ask mapped out.

Thirdly: a heck of a lot of money is being spent on bps people instead of pwme, I've spent years pulling people up on calling bps stuff 'cheap' when I'm pretty sure there has been a huge amount of money going into the bps kingdoms, all of which was sold on myths of 'cost effective' that never rang true, because they were based on fibs about '11/10 GP visits are MUS' type one-liners and their cost effective didn't involve finding something effective then seeing how much it cost.

I do think we are really rubbish as a landscape and community at overall moving forwards and not going for noise and attention over clear messages getting heard and thinking of something that will work being the focus and having a plan on what to ask for etc.

I say that not saying everyone is rubbish, but we've got a lot of disadvatnages that are unique including the parasites that have something they'd and probably do try and sell at anything and everything being happily believed and dumped on for conditions like ours whilst ignored for what they are in place of real stuff for other 'serious' illnesses. And the reason isn't that those illnesses directly debunk those pretenders.

Totally agree it came across to me like a piece of homework or something “make an argument out of x scenario for a future strategy” rather than a genuine learning?

The “ask” is always too woolly for me, as well.

I think when we put this against the backdrop of Karen Gordon’s mum being interviewed on Sky about the hospital threatening to withdraw food, we need to start with the most urgent thing and that’s how we look after severe/very severe.
It’s a current unmet need.
Lives are at risk.
There are no services and no bed in the NHS anywhere.

ME/CFS is unique in many ways, unique because we don’t know the cause, don't have any medical protocols, don't have standardised care, don’t have specialists or treatments.

All of that is eye catching. All of that is urgent. All of that unites all the ME charities and voices and activists.

Imagine if a meteor hit or something, and people’s skin started to fall off, and it was suspected that space elements we don’t understand was causing it. Then imagine that, because space skin disease was new, the NHS just didn’t treat it at all.
Some people just had an open weeping collection of sores, some had whole legs with no skin and a few only had 40% of their body with skin on. But because no known treatments work, they just didn’t have any clinics or specialists for it. They just let people die rather than try to fix it.

 

[Robert 1973]

I agree. Bringing in experts is a recipe for more of the same. Thee are no experts in this field, precisely because we know so little. Sometimes one has to sit down and think things through oneself - and the ME/CFS community does pretty well on that.

I consider you, Chris P, @dave30th, @Simon M, @Snow Leopard, @Hutan, @Tom Kindlon and several others on here and elsewhere to be experts in different aspects of ME/CFS. And all patients are experts in their own experience of living with their illness.

 

[Jonathan Edwards]

I consider you, Chris P, @dave30th, @Simon M, @Snow Leopard, @Hutan, @Tom Kindlon and several others on here and elsewhere to be experts in different aspects of ME/CFS.

We may all be experts but are we EXPERTS? I seem to remember last time I mentioned some of the things I usually say, Karen responded something like "And of course I am not dumb enough to take any notice of that stuff'.

 

[Sean]

A golden rule for advocacy is that, if you’re not getting the outcome you want, you’re not going to get far complaining that decision-makers aren’t getting the message. Not getting what you want doesn’t necessarily mean you’ve been getting it wrong, but it should always prompt recalibration. Why isn’t the message landing? How do we need to pivot?.............."
Well, yes and no. Of course if it isn't working we need to consider possible new angles out of sheer practical necessity. But...

Not at all clear to me how much more we could do, or do differently

We have made our case more than adequately, many times over, using the full range of appropriate formal and informal processes, institutions, and fora. We have more than fulfilled whatever modest obligations to raise the alarm that we ever had in the first place, and then some, well above and beyond the call of duty, and many years ago.

Why is the onus always on us to change our game to get even a barely adequate result?

When are those in power going to change their game? Because the power to deliver the solution lies in firmly their hands, not ours, and ultimately always has, and they are indisputably – thus far – failing to adequately discharge it.

The problem is and always has been that ME/CFS isn’t getting anything like its fair share of the research budget relative to disease burden. I think the argument needs to be more focused on that rather than implying that the government needs to find extra money, on top of its current budget for medical research, in order for ME/CFS to get more. In other words research into other conditions needs to get a smaller share of the total pot (whatever it may be) in order for us to get our fair share. As an advocate, I wouldn’t put it that way, but that is the mathematical reality.

Even using the most conservative estimates of prevalence and costs, research funding is nowhere near proportional to disease burden relative to other conditions. That is the message I think we should be trying to convey.

It is the most powerful argument we can use and the most difficult to dismiss. Because it is the most legit, factual, robust, and moral possible.

We are asking for nothing more than our fair share as determined by disease burden, and (equally importantly) that it be spent productively. The same standard as for every other condition, but which we have been denied for so long on both measures.

For that reason, I do think that we are further justified in requesting additional funds beyond that calculation, and for some time, in order to allow the field to catch up on decades of both serious underfunding and persistently unproductive allocation of what limited funding did come our way.

That needs to be done carefully to make sure it is spent productively, but we have a very solid claim to it. They can stop faffing about and fully fund the SequenceME project immediately, for a start. No question about its scientific and medical justification, and its potential value, particularly in cutting through decades of false starts and wild goose chases to better target research.

 

[rvallee]

The problem is and always has been that ME/CFS isn’t getting anything like its fair share of the research budget relative to disease burden. I think the argument needs to be more focused on that rather than implying that the government needs to find extra money, on top of its current budget for medical research, in order for ME/CFS to get more.

Dedicated research funding mostly comes from the charity sector, governments mostly fund basic research or high-priority diseases that are top X in terms of deaths/costs/losses. Governments will never adequately fund research in this illness, or any illness that isn't a top 10 killer, even though they lose money by being stupid about it. We have to move away from that strategy, it's not going to happen. And what money they do invest is mostly wasted on purpose anyway, as clearly no one high (or even middle) up in the institutions give a damn. And even if we ended up as a top 10-20 most expensive illness, which could happen as research progresses and formerly deadly-or-disabling diseases get solved, it wouldn't matter because we're just not being counted anyway, no one would notice, let alone admit it. We might already be there, and it could be counted accurately, and it still wouldn't matter. We don't matter to them.

The problem is that the way to solve this, governments and the institutions of medicine openly admitting they screwed this all up majorly and are so completely out of their depth they can't even handle achieving the smallest, tiniest bit of anything, and encouraging private fund-raising through supported charities, is also not going to happen, because the problem is never money, they literally lose more money this way, they will continue burning billions in funds and millions of lives just so that nothing ever changes. We simply don't rate anything to them, we aren't even equivalent to crop-wasting pests, we're the kind of pests that remain on the margins, they can and do simply ignore us and mock us behind our backs.

The only way out of this is private charity money, and lots of it. There is no substitute for this. We will never get the level of recognition that leads to exceptions, such as AIDS, cancer and cardiovascular diseases research. We need the families of the sick to pitch in, especially the rich, because this is the world we sadly live in, where only people with power can demand things, and we don't have any of our own. Our biggest problem actually is that almost everyone who recovers either does nothing, simply go back to their lives, or actively sabotage things, such as becoming commercial wellness influencers.

I have no idea how we get to there, but the way out doesn't just not run through governments, it literally avoids them entirely, because they are utterly incapable of finding the smallest bit of motivation for this, and that includes the institutions of medicine. All of them. They will screw almost every damn thing about it. This is a private issue where only individuals can move things. Governments only act when there is either pressure from the public, or from powerful people, and the public is firmly against us, because the medical profession also is, so it only leaves money and power to speak for us. Private money and private power. Which is awful, this isn't how it should work, but we will never get anywhere by continuing to run into the same wall.

 

[JellyBabyKid]

Why is the onus always on us to change our game to get even a barely adequate result?

This.

 

[MrMagoo]

What is the message that isn’t landing, again?
I don’t think that have a really tangible ask.

At this point my strategy as a toffee being not far from Hill Dickson Stadium, and knowing someone who knows the Burnham family, is to engineer some kind of sit in on a match day with “help ME/CFS” painted on a bedsheet in the hope the PM might take an interest.