Donating and fundraising by people with ME/CFS - discussion thread

Some of them aren't even charities. We have a local one, but it's a Facebook group hosted by a couple of volunteers. It's well run, their information is good, and they have access to knowledge about local services that the national charities couldn't provide.

Within reason, they could also allow critical comment or discussion about a specific clinic or private practice if members had experienced poor treatment or attitudes. That would be difficult on a charity's official social media feed, yet—along with praise for supportive GPs and helpful local authority services—it's potentially more useful to people with ME/CFS than much of the charities' combined output.

 

Do we have an info or data on whether this is still happening? Certainly some years ago some top BPSers were associating being ill with belonging to a support group (correlation being causation, obviously) but has anything changed? Are our charities not managing to get their leaflets and info into the specialist clinics, or to GPs to hand out to patients?

 

Some clinics' information sheets do include links to AfME/MEA, but I think these attitudes are still out there. In 2020, in their response to the NICE draft, the Newcastle clinic explicitly said that "[w]e would not support patients accessing information from ME organisations as we do not share the same model of CFS/ME."

 

I have donated in the past, but do not any more. I need every cent. However my will donates everything to ME research. I keep vacillating on exactly who I donate to though.

 

Is there also a ‘chicken and egg’ situation, in that the bigger charities do more so people are more aware of them so they get more donations and then are able to do more and so on?

Even with myself if asked to list charities that deserve donations I might not automatically think of the ME charities first. I think of MacMillan because of the incredible support their nurses gave my parents while my father was dying, I think of the MNDA because of the practical support they provide patients making my job much easier when I was still working in the NHS, I think of the MS Society because I am very aware of their input into big international research projects that one of my oldest friends has worked on over a number of decades. With the ME charities there are the MEA information resources and their support line or the Tymes Trust’s support for families and the various research projects charities fund but none of these have enough traction to impact on the public consciousness as other charities do.

 

My guess is lots of fundraising depends on the participation of a significant number of people with the condition, or who have had it or think they might get it. People directly impacted will naturally have much more motivation to find cures than the general public.

I think it's possible the combination of the following things greatly limits the number of these people providing the "fire" at the heart of the movement for ME/CFS:

• Little public awareness of ME/CFS, including its prognosis or even that it has a name, meaning many people who don't have ME/CFS or are mild have little idea of what ME/CFS is, thus aren't as fearful for themselves getting the condition or becoming severe.
  • On the other hand, most people getting an early mild diagnosis of Parkinson's or have a parent with Parkinson's, for example, are well aware of the prognosis, and, on average, may put forth much more advocacy effort while still able to.
• When severe enough that the motivation to have a cure is very high, the PEM of ME/CFS keeps sufferers from doing work comparable to many other conditions.
  • Just random examples:
  • Migraines, Crohn's - there is time between symptoms where people can advocate for their own condition.
  • Psoriasis, macular degeneration, some forms of cancer - these don't prevent exertion as much as ME/CFS
• The recovery rate is very low with ME/CFS, so there are few people who made it through to the other side, and thus intimately know what it's like and want to help those who still have it or may get it.
  • Though I'm not really sure how common it is in other conditions to advocate after recovery.

I think fear of oneself or a loved one getting or having a health condition is probably one of the most powerful forces for advocacy. Spreading awareness of the prevalence and the severly disabling nature of the symptoms of ME/CFS may be one of the most effective means to increase funding.

 

Sorry, I don't recognise the description, I'm not aware of any "big skew in the data" for DecodeME. All of the updates from DecodeME can be found here, https://www.decodeme.org.uk/blog/

 

GPs will not be diagnosing because a high proportion do not recognise the diagnosis. ME/CFS is not all that common and unless you come across someone socially it is easy to follow the view that there is no specific syndrome of ME/CFS. So we can expect about a fivefold underreporting of ME/CFS cases.

HOWEVER, I do not follow the view that the prevalence is then about 600,000. The problem is that the GPs who are diagnosing ME/CFS appear to be grossly overdiagnosing. One study in the states suggested that only about a fifth of people given the diagnosis actually thought they had ME/CFS themselves. So we have massive problems with both false positive and false negative diagnosis.

Which makes me think that the old figure of 125,000 people in the UK currently having ME/CFS is about right (0.2%).

I also think it very unwise to lump in Post Covid cases with 'post-viral fatigue' type problems as ME/CFS. ME/CFS is something more specific than that. Unfortunately, since very few people have read Trish's essay yet there is a lot of confusion over what PEM is and what qualifies as satisfying ME/CFS criteria meaningfully.

 

Also the number of people responding to DecodeME was I think well over 20,000, may 30,000 so with a prevalence of 125,000, a significant proportion of whom are minors - so say 100,000, we are talking of nearer 30% of eligible people. I can think of lots of reasons why it would be hard to get more than that.

 

Almost 27k participants, of whom over 21.5k were eligible to donate DNA, and just under 19k returned samples to us.

 

Do we have any good papers on the prevalence of ME (with PEM)? Especially in the UK?

I'm horrified that more than 40 years since ME/CFS came to prominence, diagnosis is all over the map and patients are being put in such danger as a result.

Do you see a solution? Do we have to wait for a blood test?

 

I feel like it was also over diagnosed once a certain CFS ago by doctors who didn’t believe in it either. A pat on the head to the patient and nod and a wink to everyone else. A ‘nice to see you again, yes pop yourself in the dustbin on the way out would you.’

But then once CFS wasn’t the fresh new thing and had been overtaken by ME/CFS which was not coincidentally a bit harder to hand wave away, diagnosis rates fell again.

That’s my imagination talking because I don’t actually know if they did, I only know how happy doctors once were to throw about the old CFS almost like it were FND or something.

 

That is a very good return rate, given the obstacles some face and the natural concerns people have about donating DNA.

 

There is still something unrecognised that creates suspicion about an ME diagnosis. I have just returned from the GP's, not one I usually see, and when I said I have ME, there was a silence, a brushing of it aside. I only mentioned it because it was relevant to some current symptoms, or they might relate to my heart. There is a sort of disapproval. Younger GPs in my practice seem more open to the diagnosis.

 

links to previous discussions on the forum:

General thread on epidemiology -- discussion on prevalence e.g. here:

https://www.s4me.info/threads/me-ep...d-peak-ages-of-onset.10373/page-3#post-279739

Other threads on prevalence discussions:

https://www.s4me.info/threads/prevalence-in-uk-by-area.38630/

https://www.s4me.info/threads/conce...s-prevalence-figures-for-me-long-covid.38250/


Also, another short discussion on another thread:

https://www.s4me.info/threads/non-e...-psychological-me-research.18266/#post-311827


(There are more....)

 

I think Nacul et al gave a conservative figure of 0.2% that went up for looser criteria.

 

Not necessarily. If studies like DecodeME and proteomics pick out a biochemical pathway that pins down an area of pathophysiology then ME/CFS will become trendy and doctors will fell it worth knowing enough about it to eb able to make a sensible diagnosis.