United Kingdom: News from #There for ME

Hi all - Trish has kindly helped to sort out the posting issues, so I'm newly able to post here! Thanks very much for the welcome. And big thanks to Robert to passing on my comments earlier. As I mentioned, I wanted to respond to some of the concerns I'd seen here to (hopefully) provide reassurance on certain aspects.

Jonathan - yes, certainly no strangers to predators! I mainly work in the humanitarian sector, as well as sometimes immigration policy, so very familiar with complex fields of work with lots of different actors, vested interests, mandates etc. A lot of my professional work has involved building consensus amidst complex dynamics. I'm not underestimating the difficulty doing that here, and want to learn from others who have tried, but I'm certainly willing to give it a shot.

Of course, appreciate that Sec of State/DHSC is operationally independent from NHS. But clearly the political environment matters in terms of what gets prioritised and so to me that's a reasonable advocacy target.

In terms of what we want, we have an ask around biomedical research funding. On the care side - safe care is the first thing. I think that's the lowest hanging fruit for building consensus. Priorities for safe care (i.e. care that doesn't make people worse and saves lives when needed) are developing infrastructure that supports appropriate care for the most severe cases that end up in hospital (and/or in the community). Plus adherence to NICE - eliminating GET etc. Beyond that is meaningful care. Research is clearly part of the puzzle and e.g. access to emerging treatments through clinical trials. In terms of the best NHS setup for specialist care I'm open to persuasion. I've been through an NHS ME/CFS clinic so well familiar with what that looks like and its inadequacy. I think there's good arguments about multi-disciplinary approaches taking infection-associated chronic conditions together (how feasible that is in the NHS is another question). Ultimately I think it's a complex question, with many different reasonable answers. We're open to ideas - particularly via our Substack which we see as an ideas space to spark conversations.

Anyway, I've been far too distractible today, so will leave it here. I'll try to check back occasionally and happy to discuss the best way to loop in some of the experience here to our plans and thinking (I'm not sure the exact setup of S4ME but Trish and Robert have my details!)
 
Karen Hargrave said:
Of course, appreciate that Sec of State/DHSC is operationally independent from NHS. But clearly the political environment matters in terms of what gets prioritised and so to me that's a reasonable advocacy target.
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I am not sure the political environment affects (GP) prioritising at all, though. It is not the divide between DoH and NHS that I see as the problem but the divide within the NHS. De-centralisation of decision making has meant that GPs commission whatever is cheapest, since they have no other option. Physicians are seen as too expensive.

The only comment I remember from the current prime minister on health was something to the effect that it was ridiculous for people to have to see a doctor before being able to get some physio. The government is now putting heavy emphasis on prevention (=exercise + exercise + exercise) and on de-centralising further to put things 'in the community'. If ME/CFS got special attention it is likely to be in just such terms.

Karen Hargrave said:
Priorities for safe care (i.e. care that doesn't make people worse and saves lives when needed) are developing infrastructure that supports appropriate care for the most severe cases that end up in hospital (and/or in the community).
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I agree that is a priority, but it is couched in general terms that others with different ideas could turn around into all sorts of things. Who gets to decide if a Task Force is set up?

Basically we need GPs to commit to paying for very quiet rooms staffed by people who have not only read the NICE Guidelines but have experience with care of people with ME/CFS. We don't need facilities for giving untested saline infusions.

Karen Hargrave said:
I think there's good arguments about multi-disciplinary approaches taking infection-associated chronic conditions together (how feasible that is in the NHS is another question).
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Are there? I don't know of any approaches much at the moment and multi-disciplinary care in this context nearly always means passing the buck so nobody takes responsibility over all. (I am talking of multidisciplinary in terms of lots of different therapists. If the idea is to have several medical specialties involved then the question is what are they there for if we have no treatments?)

Why does the link to infection matter? Why group patients that way? We don't really know how important infection is in ME/CFS. Beyond giving antimicrobials link to infection has never been very relevant to care of things like rheumatic heart disease or Reiter's syndrome. I am wary of Twitter-science in this context. There has been a lot of guff around Long Covid. The reality is that we are still trying to hit the ball - we haven't even got to first base yet.
 
Hi Karen and welcome! Great to hear you are not naïve!
Many here including me don’t bother with social media or other online spaces as it’s too much hard work tbh. I’d appreciate if you’d engage with S4ME via the mods or in person!
Are you working with the APPG on ME as I think there’s an overlap in their aims and yours.

in the current circumstances as of today, 20 Sept 24, I would like GP Practice Nurses to be trained on ME (like they do for diabetes/asthma etc) and ”see” patients annually to review their health and care plan. That’s an ask which GP surgeries could put in place today if they wished to.
As most GPs offer telephone and online appointments, this would cover mild and moderate patients easily enough.

For severe and very severe there would need to be more thought; I’m not S/VS myself so I’ve no real idea.
 
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They are working with AFME and other charities so I’m sure that will plug them in to APPG when it’s formally reconstituted.

I actually read the full document today and I thought it was a very good high level summary of what needs addressing evidenced by experience.

I hadn’t written to my MP at the time the call went out because I was already in contact with her quite a bit over the summer. But I will share this with her, I’ve already told her that the delivery plan is a minimum product.

at each stage in moving away from the old PACE status quo theres a fresh challenge, the decision by nice saying no review of the 2007 guidelines was needed getting overturned was the first brick removed. The delivery plan is just another brick, there are more bricks still to remove.
 
Karen Hargrave said:
While we may look like a slick operation from the outside, in reality we’re a small team and an enormous effort went into collating the signatures, with many more received than expected. We’re sorry to have created concern or confusion. We’re as in the dark as you are about why some of the individuals you highlighted signed the letter.
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Let's not let perfect be the enemy of good. As long as they adapt to feedback we should be focused more on getting it right than objecting to it. As they say, it's a small operation and it usually takes many years for most people to see the depth of depravity of some of the people involved like Chew-Graham. It's very hard to believe at first, although seeing how it has impacted Long Covid is quite obvious when it's felt personally.

Everything I've seen from the leaders here tells me they do mean well and have strong personal stakes in the outcome. So I would assume good faith until proven otherwise, and I doubt it will it would go there. Every effort on this issue remains shoestring and it's hard enough to get anything going that one thing we certainly don't have to fear is that one initiative manages to take over the entire issue. That's just not going to happen. It's going to take the sum of many efforts to get anything at all done and the systems that need to be changed are enormous and unwieldy as a mountain on a skateboard.

But it is very difficult to get all of this across. I think that's part of what went wrong with Bastian, she just couldn't deal with the reality of how awful those people are, and regressed in a position of comfort where the medical profession, her profession, just doesn't do... exactly what it does. We are dealing with some people, the BPS overlords, whose every goal is the exact opposite of what we need. Their success means our deaths. Literally. If they succeed long enough, for most of us who remain ill until the day we die there is nothing but misery and death while they get awards and applause. And it's very hard to make this point without sounding a bit shrill. Because it is an extreme situation, because it's all happening in such a casual slow-rolling way, a slow poisoning rather than carpet bombing.

For sure people like Chew-Graham and a few who have evangelized for the LP and other garbage stuff need to be kicked out of this list with extreme prejudice. Ideally. We have to get this point across in a way that makes relative newcomers understand that we have been dealing with them for long enough, but from a position in which they started something that we did not. We can only advise and hope that small course corrections are not some indictment of the whole effort.

We have to consider how hard it is to make any impact at all. We have the facts on our side but that doesn't matter here. And this initiative has had a pretty good response so far. It just needs a nudge or two.
 
I want good research to find treatments and until then that to ensure day to day care for other issues and any emergencies is delivered in a way that is understanding of and doesn’t make my ME worse. I’m terrified of ending up in hospital after previous experiences.

This is what I’ve been asking for locally but it seems impossible within the current system in which we end up like a lost ping pong ball with nobody taking responsibility. Occasionally offered some advice on pacing or someone to talk to (so GET/CBT) to show they’re doing something if we kick up a fuss.

Regarding specialisms, no matter where we end up until there is proper education for all medical professionals on all of the ranges of ME we will face problems. It’s not the specialism that’s the problem but the ignorance and misinformation. We probably need an acceptance from all that until research bears fruit we can’t do anything other than ‘don’t make things worse’ for now. Well intentioned actions can cause harm.

p.s welcome to the forum @Karen Hargrave
 
Jonathan Edwards said:
But what gap, David?
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There's a huge gap in awareness among the public and in training among health care people that ME can get so bad that people can die from malnutrition. That means patients get treated completely inappropriately by clinicians and in hospital, as we've seen. So yes, I consider that a "gap" that needs to be addressed. How exactly it gets addressed is of course a different question. But generating awareness around the issue seems worthwhile. Like any effort, of course it could all turn into a disaster, and every path has potential pitfalls.
 
dave30th said:
There's a huge gap in awareness among the public and in training among health care people that ME can get so bad that people can die from malnutrition. That means patients get treated completely inappropriately by clinicians and in hospital, as we've seen. So yes, I consider that a "gap" that needs to be addressed. How exactly it gets addressed is of course a different question. But generating awareness around the issue seems worthwhile. Like any effort, of course it could all turn into a disaster, and every path has potential pitfalls.
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I think that “gap” needs its own public awareness campaign. Which is difficult as we’re only just being acknowledged, let alone understood.
 
dave30th said:
There's a huge gap in awareness among the public and in training among health care people that ME can get so bad that people can die from malnutrition.
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The letter talked of gaps in care.

I agree that there seems to be a gap in awareness amongst professionals about the risks for people with severe ME/CFS, although in the cases we have seen the awareness of risk seems to be there - but the choice of action seems inappropriate.

My concerns are about the practicalities of implementing the proposal. I have been sitting on the Government Working Party dealing with research. Sadly, it seems to have been largely an exercise in washing away the problem. Advocates have had their say and been given the impression that something has been done, but I am not sure what.
 
Hi all - thanks again for the warm welcome! And special thanks to those who sent your best to James. He's a former scientist (Materials Science PhD) turned data analyst, so I think he'd be intrigued by this forum. He can't currently go online due to his very severe cognitive symptoms but maybe one day he'll end up here.

I wanted to share a couple of things. The first is that we now have an official #ThereForME suggestions box - which is on our Linktree page here: https://linktr.ee/ThereForME

As I mentioned, we're keen to collect ideas and feedback but we have been struggling to manage that across a lot of different platforms as the campaign has grown. The idea is that the suggestions box will be a central space, so if you have feedback or ideas to share, please let us know there! We'll be checking it intermittently. For now, we're particularly interested in ideas around our two priority areas: (1) Accelerating biomedical research, (2) Safe NHS care.

I also wanted to draw your attention to our £100m challenge. We're aiming for a series of posts on our Substack from researchers and patients sharing ideas for how they would spend £100m annual biomedical research funding for ME and Long Covid in the UK over a five-year time horizon. Our first response was posted here - and we're keen to do more in the future. I thought I'd share in case anyone here would be interested, or maybe even a joint Science for ME contribution could be done? Anyway - just throwing that out there. Have a nice weekend all.
 
Karen Hargrave said:
Our first response was posted here - and we're keen to do more in the future. I thought I'd share in case anyone here would be interested, or maybe even a joint Science for ME contribution could be done? Anyway - just throwing that out there. Have a nice weekend all.
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@Karen Hargrave
Dear Karen,

I greatly respect your enthusiasm but before getting involved in science I think it is worth making sure you are aware of the pitfalls. The Kell and Pretorius piece is, to be blunt, a word salad of scientific misinformation. It may surprise you to hear me say that but the reasons behind it have been discussed at length on this forum and I am far from being the only person to think that*. Biomedical science has been taken over by a sort of hype competition on Twitter that you have to get through before you get to the actual science - stuff like DecodeME.

We have lots of ideas here on the forum - every day new papers are discussed and new theories proposed. My suggestion for the box is that anyone getting involved in any research related to ME/CFS should join S4ME, just as I did, and never looked back. The level of scientific debate here and the intellectual level of the members (counting me out) is far higher than you will find in professional scientific fora - I guess because everybody here is interested in finding the right answer, not just getting a paper published or a grant awarded.

* If you are interested in ME/CFS research you probably know my background, but if not, I am a professor of medicine with a special interest in autoimmunity (which is why I got asked in by PWME in the first place).
 
Jonathan Edwards said:
We have lots of ideas here on the forum - every day new papers are discussed and new theories proposed. My suggestion for the box is that anyone getting involved in any research related to ME/CFS should join S4ME, just as I did, and never looked back. The level of scientific debate here and the intellectual level of the members (counting me out) is far higher than you will find in professional scientific fora - I guess because everybody here is interested in finding the right answer, not just getting a paper published or a grant awarded.
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Which is why I'd be interested to hear a view from S4ME on how significant biomedical research funding would be best spent. The opportunity is there if those in this forum are interested.
 
Karen Hargrave said:
Hi all - thanks again for the warm welcome! And special thanks to those who sent your best to James. He's a former scientist (Materials Science PhD) turned data analyst, so I think he'd be intrigued by this forum. He can't currently go online due to his very severe cognitive symptoms but maybe one day he'll end up here.

I wanted to share a couple of things. The first is that we now have an official #ThereForME suggestions box - which is on our Linktree page here: https://linktr.ee/ThereForME

As I mentioned, we're keen to collect ideas and feedback but we have been struggling to manage that across a lot of different platforms as the campaign has grown. The idea is that the suggestions box will be a central space, so if you have feedback or ideas to share, please let us know there! We'll be checking it intermittently. For now, we're particularly interested in ideas around our two priority areas: (1) Accelerating biomedical research, (2) Safe NHS care.

I also wanted to draw your attention to our £100m challenge. We're aiming for a series of posts on our Substack from researchers and patients sharing ideas for how they would spend £100m annual biomedical research funding for ME and Long Covid in the UK over a five-year time horizon. Our first response was posted here - and we're keen to do more in the future. I thought I'd share in case anyone here would be interested, or maybe even a joint Science for ME contribution could be done? Anyway - just throwing that out there. Have a nice weekend all.
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im really sorry to ask this and it’s not meant badly, buy why do you want people to write how they would spend £100m? To what end?
Is it for engagement?
 
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MrMagoo said:
im really sorry to ask this and it’s not meant badly, buy why do you want people to write how they would spend £100m?
Is it for engagement?
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Don't worry, it's a good question! We want to demonstrate that there are substantive ways to spend the money - and that it could be spent in ways that could advance treatments. Without being a scientist myself, my understanding is that a lot of the £50m (?) that went into Long Covid research was not well spent - and so part of it is also trying to explore what better could like. Our Substack has a decent readership, mainly from the ME/Long Covid communities but also a few in the media - we've also shared pieces (although not yet on this theme) in our outreach e.g. with parliamentarians. We want to find accessible ways to get some of these points across.

We're well aware that not every scientist would agree on how the money would be best spent. Part of the point is to show that there's different, substantive ideas out there. If you disagree with the first piece in the series, and have the energy/headspace, we want to hear how you would spend the money instead.
 
Karen Hargrave said:
Which is why I'd be interested to hear a view from S4ME on how significant biomedical research funding would be best spent. The opportunity is there if those in this forum are interested.
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There isn't a simple answer that you can put in a post, Karen. There are thousands of words on hundreds of threads about this. We have been pondering it daily for seven years.

The simple answer for the moment , though, is that until we have the DecodeME results and the PrecisionLife results, I cannot think of anything I would invest a large amount of money in at present, beyond complex pathway proteomics approaches already underway in Europe and some interesting studies of flagellin antibodies, also continuing in Europe. More neuroimaging would be nice but some pretty good people have been looking in to that over the last few years and not found anything dramatic. Long term actimeter studies of various sorts would probably be worthwhile but that sort of research is difficult to set up without clinics with patient cohorts to tap into.

A while back the MRC asked me the same question and I came up with more or less the same answer - except that a genetic study was then just an option, which seemed to me a good one.
 
Karen Hargrave said:
Covid research was not well spent - and so part of it is also trying to explore what better could look like.
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Believe me, Karen, some of us have been scratching our heads about this for a while. Perhaps of note, the other international experts on the MRC board I sat on had even less to suggest than I had. There are no leads. No leads. all the stuff out there is so far speculative and unconvincing. I don't say this to be difficult. I say it to be honest, because there is nothing I would like more than to have spent the last few years of my biomedical life helping just a tiny bit to get ME/CFS research on the right track.
 
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