#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 :