#ThereForME campaign / Building an NHS that’s there for Long Covid and ME

I wish #thereforme could clone themselves to my country, @Karen Hargrave so impressed with what you are doing!

 

The six items are fairly close to what the delivery plan has been set up to say anyway but they are fair enough. Some specific points I would make:

1. The key issue of patient safety is very specific - changing the British Society for Gastroenterology resistance to feeding support for 'functional' patients. I have been battling to get people to be open and specific about this but it is pretty hard going.
2. It would be nice if the government could be a catalyst but ultimately research has to be justified by the quality of the questions asked and proposals to answer them. If funding was swayed by lobbying that would get lost. Nevertheless, there have been barriers that needed to come down. The discussions on the working groups suggested that almost everyone involved in funding is still playing by their own rules. But alongside that there has been a quantum leap in the quality of science and there also seems to have been a shift at MRC that might be helpful. The long and the short, I suspect, is that we will see better funding coming along but the main driver of that will be what it always should be - good proposals.
3. This seems to me a seriously bad idea. Off label use of drugs is not the way to go. There is nothing out there I would want patients to be given because nothing looks as if it does anything or has any decent rationale. We don't want people on anticoagulants and IV saline.
4. This also seems to me misguided. All it will do is bolster the multidisciplinary therapy bandwagon. What is wanted is not care in the community, which is meaningless. What is wanted it care at home and the best way to provide that is for expert nurses and OTs attached to specialist hospital units to do domiciliary visits - which is what we did in the 1980s. You have to have the physician-led hospital base in order to have the expertise. 'Care in the community' is killing healthcare, not helping it.
5. I am not quite sure what institutional ownership means. The main idea seems to be a call for a centre of excellence. We already have one - Edinburgh. It doesn't need to be called a centre of excellence but it needs secure continuity of funding. I am reasonably optimistic that will happen.
6. The targets seem pretty clear anyway. Saying you will reach them doesn't add much. We need a hospital-based physician-led specialist service with some expert academic centres and we need good research to find out how to develop treatments. The second may be in bud. The first seems nowhere on the horizon and 'community' emphasis will just perpetuate that.

 

Nightsong said: ↑
Some good ideas but frankly the last thing we need is the UK equivalent of a "Cohen Center for Recovery from Complex Chronic Illness".

And I really don't like the concept of IACCs/IACCIs, which seems to be a concept out of the US which is ill thought through. Solve ME previously issued a paper promoting this concept which IMHO would be counterproductive if implemented.'

EDIT to show this is the post i replied to, as follows :
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then as ever the wider community needs to discuss matters using the preplanned terminology that may allow for a broad consensus and outnumber all schismatics and contenders with fully informed decisions all round for all of us being swung

As I am fairly sure #ThereForME have the track record to show they would attend and participate since working out the history and deciding to campaign for ME upon all the intelligences received, and quite distinctly basing their camaign upon the Long Covid predicament at their heart and merging with ME / CFS predicaments

I have no idea how the wider Long Covid community may agree about being represented and engaged and including all of us in their campaign, ditto the wider ME / CFS community. There must be formats and terminology everyone can agree

From what I read here, I would propose consideration of a network of research clinics modelled on the JK Rowland (M.S) prototype if its as good as it sounds, and I would propose it be funded by the Crown Estate (UK) the part that equates to the Scandinavian Inheritance Fund

we will need the terminology for consensus on research criteria


EDIT to show post I replied to

 

Good job there’s a cat in hells chance of anyone doing anything, then.

 

whoops, i cross-posted not having read the last 2 messages but in reply to :

 

A #ThereForME guest post by @dave30th:

"When bad science becomes orthodoxy: Reflections from a decade of debunking the PACE trial".

https://www.thereforme.uk/p/when-bad-science-becomes-orthodoxy

 

Hi, I'm curious about what your concern is about this concept?

 

The evidence that ME/CFS is 'infection associated' is pretty vague and inconsistent. I suspect it is heavily confounded by conflation with post-viral fatigue, even for EBV.

I too very much dislike the IACC terminology. It rapidly gets mixed up with the quagmire of 'Lyme disease' and 'PANDAS' and all sorts. The term is driven by biomedical politics and revenue from patients. It is likely to be associated with research that isn't focused on the core issues of ME/CFS.

The Cohen Centre for whatever at Mount Sinai comes out with:
Our guiding principle is that clinical CoRE offers comprehensive interdisciplinary care through a unique hybrid clinical research and education program that centers on pinpointing and addressing the root causes of diseases and managing symptoms.

Which is of course complete bullshit.

 

New blog post today by David Tuller:

"When bad science becomes orthodoxy: Reflections from a decade of debunking the PACE trial"

https://www.thereforme.uk/p/when-bad-science-becomes-orthodoxy

 

I think Bicentennial was quoting my post, so:

The first question I had when I saw the term was: what illnesses are they including in the concept of "IACCs"? If you take a look at Table 1 in Solve's paper, you see the list: Long COVID/PASC, ME/CFS, fibromyalgia, post-treatment Lyme, POTS, MCAS, EDS and GWI.

The first problem is that what these conditions have in common isn't that they're infection-associated (fibromyalgia isn't, EDS either refers to one of a number of Mendelian connective tissue disorders or the type III polygenic hypermobility, no real evidence for the nature of the trigger in GWI, many cases of ME/CFS aren't infection-associated). They're not suggesting an institute that would include, say, Guillain-Barré syndrome and reactive arthritis - both are "infection-associated" but no-one would think of grouping them together in a similar way let alone grouping them with ME/CFS, fibromyalgia, etc. In fact the only thing the conditions on Solve's list of "IACCs" all have in common is that they're poorly understood or defined & sometimes psychosomatised.

I think it's counterproductive firstly because there are many "infection-associated" conditions where the link to infection isn't at all the most interesting or salient feature, and also because we've been trying to define ME/CFS quite narrowly, around the concept of post-exertional malaise & so forth and Solve are working against that by trying to lump ME/CFS into a broad category containing a wide variety of often poorly defined syndromes encompassing all manner of unexplained symptoms.

I suspect there may have been political reasons for introducing this concept (trying to establish a link to COVID and the increased funding for infectious disease research) but it's not very well thought through.

 

Thanks, I figured the concerns were more or less what you and Jonathan have expressed.

 

This is entirely backward to technology R&D, which is massively more effective than the traditional academic research model. To solve a problem you have to set out to actively work out a plan, and execute that plan in a way that leverages resources and is accountable for results. That means resources and people with clear objectives in a stable work environment. In technology, we don't just ask for someone to come up with a good proposal. It's such a bizarre way of approaching problem-solving, and a major reason why nothing at all has been produced in decades here.

Here it's not working because there is no other possible actor than governments while apparently expecting that not doing the work will produce the same results as doing the work. The only rational explanation is a lack of motivation to solve those problems. And given that the lack of motivation isn't just obvious, it's ostentatious, it only makes the failure that more explicit and intentional.

It seems like the usual academic way applied to medical problems is basically a shrug: "someone will come up with something, maybe, or whatever". No wonder nothing is working until the first working prototypes, there doesn't appear to be a coherent process to get there. It either happens or doesn't, we may as well depend on heavenly grace. Always waiting for things to fall down from the sky. Never managing to work in collaboration, to learn from others. Always aiming at the ground and never being bothered that nothing ever gets hit.

 

But R & D is by definition different from basic science in that you know what sort of solution a problem might have. In basic science you don't know what the solution could be until you have a lead. No lead, nothing to plan.

 

It would be great to have THE solution, thanks to basic science. But until then we could easily have something 100x better than the nightmare dumpster fire we have seen. Instead all we see is useless crap that leads nowhere, because the R&D process in health care is basically worthless junk without a magical bean.

We don't need the perfect solution. We don't even need a great solution. We just need competent, effective solutions. We haven't even seen a shadow of that, and barely anyone seems to care. This is a huge difference in mindset, in giving up trying to work out a passable solution because it's missing the secret ingredient.

 

It is pretty dismal, I agree, but if you have no idea where to look for a solution, and pretty much we don't, then competence and effectiveness don't really come in to it. You can ask for an effective way to produce unlimited energy from a widget the size of a matchbox but if nobody knows how that might be done, it's hard.

 

its frustrating, I think there is potential in the DecodeME data and the LSH&TM biobank data, if someone can work some AI magic with it

while we wait though, my feeling about the aims of #ThereforME regarding the NHS is we gain no benefit in letting perfection become the enemy of the good and we can still do a lot of good at a practical level

in the absence of proven science, the NHS service given to PWME can still be improved from absent or misguided and dangerous, to appropriate and helpful

if I look back past the ten years I spent undiagnosed to the point I showed symptoms of ME and ACAI (atypical chronic active infection), if the doctors I asked for help had recognised both syndromes and given me a diagnosis (rather than having no clue or even one guy telling me "that does not happen") and advice to pace and avoid push-crash etc not fight against it, my life could have been incredibly different even in the absence of other treatment

for that to happen we need GPs to be taught to recognise the nature of the syndrome and to know the appropriate methods for management as distinct from other conditions, i.e. not like physio for injury etc, we know enough about how it presents to provide a model of good practice based on consensus of clinicians who understand what good practice looks like with ME and have patients' organisations backing

shouldn't that be enough to improve the NHS wide acceptance of appropriate understanding?

 

It’s not rocket science - do less than you’re able to and don’t exercise. That’s pretty memorable. They just don’t like the idea.

 

It's more that this idea has two implications: 1) lots of disability support until 2) research is heavily funded and streamlined to produce results using coherent clinical pathways designed to learn and deliver.

The initial idea meant they have nothing to do, and they're stuck there. They like it. They don't want to do the work, so any solution that involves doing the work they don't want to do and provide help and support until then is a non-starter. Especially as providing support until something is achieved creates accountability pressure, deliverables, etc. A huge contrast to the indefinite "nothing to worry about, we don't care anyway, they can fuck off and suffer forever for all we don't care".

All I hear from this is "this is the way it's done". This is the second worst excuse out there, after "we were just following orders". The way it's done is terrible, but they don't like to hear this either, so misery is amplified 100x. "The way it's done" leaves us eating grubs on the forest floor, which also happens to be our toilet. I can never accept "this is the way it's done". I don't understand why it's so common in health care, of all places, but it's not acceptable, it's immoral.

 

I like the sentiment but if two of the main suggestions go in the wrong direction that isn't going to achieve that good. Recommending off label drug usage is a bad idea that will open up the quack market and may do a lot of harm. Emphasis on 'care in the community' jut ensures that nobody develops any exercise and the old habits remain in place.

 

apologies, I was referring to GPs only