Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

@Natalie if not many photos arrive, it may be worth doing a new post requesting landscape photos and linking the post to this thread to explain why you need them.

UK Research Funding graph - @Graham would you have anything Natalie could use please?

ETA - I have sent a message to @Graham to see if he can help.

 

I'm afraid all my funding analyses are way out of date. But I'm pretty sure that my comment about the total spent on biomedical research into ME over the last 40 years is still around one week's current funding into HIV/AIDS. It might now be safer to say two weeks' funding. That's a calculation that needs a lot of estimation, but the NIH investment alone into HIV/AIDS comes out at around $58 milion per week (actual spending 2018). Given that the spending up to 2011 into biomedical research runs at just a handful of millions, all the recent activity still doesn't make much of a dent into it.

Mind you, if you add on Big Pharma spending on HIV (unknown, but large) and on ME (unknown, but probably zero), it would probably work out at much less than a week's money.

It wouldn't be too much trouble to look at NIH spending and compare amounts allocated to various chronic conditions, similar to my bubbles video (https://report.nih.gov/categorical_spending.aspx): in the UK it is much harder to get an analysis of spending by category – the MRC do not believe in producing that sort of analysis.



Overall, the UK's economy is about one-sixth of that of the US, but we spend less in proportion on medical research in terms of government grants, but contribute more in proportion through money collected through charities. In the UK the two main government funded sources are the MRC and NIHR (the research wing of the NHS), each spending broadly the same amount of money. It's only very recently that NIHR has invested in research into ME, and, from memory, that has been psych stuff.

There are two very big charitable foundations that often fund medical research. In the UK it is the Wellcome Trust and in America it is Bill Gates' charity. They are broadly equal in size. I don't think Bill Gates has funded research into ME, and until recently neither had the Wellcome Trust.

 

It is very time consuming to get decent data about the UK funding: with the MRC in the past, when I have asked for or searched for trials/studies on CFS, or on ME, I have had to check each one in detail to see whether it actually is on ME, and, of course, you have to check all the variations.

But as official funding for ME research in the UK is so small, so sporadic and so hard to pin down, it might be better to try a more general approach. The other problem is that the differences in amounts between medical conditions is so great that you need to use area to represent the quantities (hence the bubbles).

If you can sort out what you would like to do, I'm happy to help if I can.

 

There are graphs of worldwide research funding here
https://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf

 

Nice find, @strategist : I missed that when it came out.

 

Thanks. I did speak to Russel and Charles about this but the PWME have offered their photos specifically for MEA use. Russel offered to post for requests for photos for Dialogues and I may take him up on that... not sure yet.

 

Brilliant. @strategist and @Graham The one comparing ME/CFS to other neurological conditions would be fine - or even just part of it. I just need something to accompany Jo saying Funding for research has been inadequate and Eliana saying most of it has been for biopsychosocial research - it needs to be simple and only up briefly. Thank you very much.

 

@Graham Thank you very much for all this and offering to help. I think I can keep it very simple and us the AfME one, as basically I need it for editing purposes, rather than necessary information.

 

Oh the AfME one knocks spots of anything I have! And, of course it is up to date. Bear in mind though that much of (most of) the spending on ME is the psych stuff.


The only point I like to make when people ask me about the lack of findings (or rather substantial findings) is to ask them how much progress do they think is made in HIV research in a week's worth of money.

 

More help needed please. Does anyone have any old photos or copies of old newspaper articles promoting research into CBT and GET as treatments? I need a image or two to put into the Introduction to ME/CFS video.

 

I'm sure there was a thread somewhere that collected images of press coverage... I can't find it now.

There's this 2015 Telegraph one on PACE LTFU:

 

Here are some online articles from back in the days, perhaps you could take some screenshots of titles?

Reuters - Pushing limits can help chronic fatigue patients

The Guardian - Study finds therapy and exercise best for ME

BBC - Brain and body training treats ME, UK study says

Daily Mail - Got ME? Fatigued patients who go out and exercise have best hope of recovery, finds study

The Independent - Got ME? Just get out and exercise, say scientists

Medical News Today - Chronic Fatigue Treatments Lead To Recovery In Trial

 

Thanks Michiel. I'll try that. I contacted Margaret Williams who had a large collection of old newspapers etc, but they had gone in the bin the day before!!!

 

www.dialogues-mecfs.co.uk Following the first screening of 'Understanding Post-exertional Malaise in ME/CFS' yesterday at the CMRC conference in Bristol, the new 'Dialogues for a Neglected Illness' project website is now live. The project now includes the last video finished, 'An Introduction to ME/CFS', as well as two new PEM videos (one longer and one brief) and two GET videos released earlier.

 

Well done! The videos look very professional and the experts in it explain things very clearly. This is definitely a useful tool to help educate people about what ME/CFS is and what the problems are with PEM and GET. I've enthusiastically shared a link to the website on social media - I hope that's ok.

If I would make one criticism, it would be that you give quite a lot of credit to current theories about what's happening physiologically during PEM, in other words, the view of the Workwell Foundation researchers and Systrom. I'm not so sure that their claims will stand the test of time. There's, for example, this graph that is shown in the PEM video with a decline in VO2 peak on the 2-day CPET with the 2007 study as a reference, but if I remember correctly this is something that hasn't been confirmed by most studies. The only thing that has been consistent is a decline in workload at the ventilatory threshold.

 

Thanks Michiel, and for sharing the website link. I've put a link on the Voices from the Shadows facebook page too. Fortunately we can change the videos if necessary in the future and we can put extra resources and qualifying info in the back up material on the website. I shall be glad to get on with finishing off the Severe ME videos now.

 

link without going through FB
http://www.dialogues-mecfs.co.uk

 

This isn’t really about the videos but this way of framing M.E that’s repeated often but is it accurate ?

dr Nacul says
“There is a chance of recovery, beyond that point most people will continue chronically with symptoms of disease, many of them will improve with time but recovery is quite unusual and some people unfortunately , I would say a minority, get worse with time and continue to remain disabled long- term. “

But this is often said by others. however ...
If we take a forty year time frame and allow people in that to get diagnosed have some kind of “journey” -either up or down - and then Essentially settle , if most people were improving to 80 % or higher, but 20% “got worse” wouldnt the largest group in surveys be the mild of 75% function and above not the moderate ? Given that some also start mild and never progress.


And yet this isn’t the picture is it? Don’t surveys suggest a 25%- 50%-25%spread with the moderate forming the most common severity or is that just MEA surveys etc which might be skewed to the more ill. Is there data on that anyone ?


I’ve had concern with the well trotted our “most get better over time but few fully recover & a minority worsen or stay severe ” description because I think , to the public and medical profession, it seems like most do fairly alright in the end (obviously mild is a category in itself with variation and some struggling to socislise & unable to be very physically active) but they might not fully recover. If a significant portion are ending up (either through going up or going down ) moderate that isn’t really covered by the narrative. I don’t think a thirty year old who’s been ill since 16 and maybe improved enough to get out of bed and potter, would consider living at 50% function unable to work, or be very active/social “a pretty good quality of life”. I know that “improve with time doesn’t” specify that, or a high end point but the lack of specifity is the problem, because if it’s immediately followed or qualified with “few fully recover” , I think that “return to high function” could be assumed if not implied.


Really it depends on the stats. The people who’ve only been ill less than five years are probably still “journeying” but the body of people accumulated with the illness since the 60s and & have it chronically , what are the stats on population severity and if it’s indeed, at a snapshot sample, on average 25%-50%-25% or even if it’s more 40-40 - 20, don’t we need to convey that impact on functionality in prime age people better?

 

Merged thread

New video on severe ME and very severe ME

As my mother and I were filmed for this project, I just got an email that one of the videos has been made public.

It is supposed to be here: http://www.dialogues-mecfs.co.uk/films/severeme/ but currently is available here:

Discusses some distressing material.

https://twitter.com/user/status/1265286597701926912