Action for M.E. 2019 AGM and conference 15th October 2019

yes. But what's the point if they ignore the results; ie the survey they did before the PACE trial showing that (can't remember the actual figure) 50% (?) of people reported GET making them worse.
Yet they still thought it was a good idea to put more pwME through it for the PACE trial.
Then they act all surprised and said 'but our survey....'
How was that ethical or in the best interests of pwME?

 

Does Ed scully have much influence within the department of health, is he an established ally or an invited official?. I missed the first half of the discussion.

 

https://twitter.com/user/status/1184359730271211520

 

We can always want more but it is something and it’s not as if it is solely a research charity and it’s not even the only charity raising money for research in the country. Lots of ME charities around the world don’t raise anything for research.

I remember when Chris Clark said they were no longer going to raise money for research and instead were going to lobby for research with the pie-in-the-sky figure of £35 million a year, 1% of the cost to the country figure. I don’t recall many people challenging it: lots of people in the ME community seem to think it’s really governments’ job to fund nearly all the research.

 

Thanks that’s helpful. I had seen some background info but couldn’t locate it. I’m wondering if we are expecting him to do anything or if like the minister of health, Stephen brine he will essentially listen them declare the usual wheels must all eventually turn to produce progress without any intervention. In my view the British position of saying the CFS biomedical research field must grow alone when the medical schools weren’t teaching it & the rcgp were teaching it’s deconditioning and exercise was massively over represented as effective treatment for an imposed broad umbrella the patient group has always criticised etc was ludicrous.

The bits I did hear seemed to be about us producing the evidence to convince the hostile mindsets. Well we have been trying past decade but I’m personally hostile to the notion that on many layers obviously unwell people have to somehow demonstrate how their bodies (Via an abundance of good expensive biomedical research) are ailing before prejudiced physicians will even listen to any “arguments” they are making. I watched the talk by dr Ron Thomkins the other day, very much a newbie, but seemingly entirely aware of the core presentation of the illness and its “devastation “ , his word, so it seems more a problem of prejudice in parts of the world and a tendency to by default treat the unexplained as psychological than just “ a weak case” on our part.

it would br Nice if people in power could start to recognise that the system in place has cracks and means that it’s not always that research interest & state resource is commensurate with disease burden and not ethical to leave the stigmatized or unpopular to languish. That’s also possibly a problem in other illness where breast cancer is more “ sexy “ to fundraise for than prostrate.

 

This struck me hard in the context of the NICE committee. The answer to the criticism of PACE from the therapists is that they do not do the treatment that way anyway. So there is no evidence base at all! They do not appear to understand the ethical responsibility to know what they are doing. It is completely impossible for therapists to know what is best for each patient if we do not even know any of what they do is of any value.

 

Ed Scully seemed astonished that people could die from ME when he was talking to Nina afterwards, at which point I gave him a dvd of Voices and asked him to also look out for the Dialogues project on the Voices website - videos that should be suitable for GPs. I also gave a dvd to Ben Howlett ,as they had both said they wanted to learn more about the illness.

 

I asked the question about whether DoH/NHS yet know how many people there are in the UK living with ME? (following on from the questions asked by the brilliant MP Carol Monaghan in the various parliamentary debates earlier this year where it was clear the DoH didn't)
I still don't know the answer to be honest. Does anybody?
Surely the NIHR/PHE or NHS? could use their databases to search the GPs electronic records to find out? (I know I'm very easy to dismiss because I'm just an overwrought, angry and frustrated pwME.....apologies for the rant.)
What's the point of getting and storing the data if it isn't mined for information?

 

I find Your lost voices book is a great resource to share too @Nathalie Wright . People can get the gist just by flicking through and reading one case study. That’s sometimes less intimidating/“burdensome” than the film I think.

 

Playing devil's advocate here, on the same basis we could look at the amount of money that IiME raises and then complain at the lack of services other than research that they supply. Not every organisation is going to be totally focused on research.

 

there was this prevalence research by nacul et al which I thought was pretty good using Fukuda versus CCC possibly. He studies data from a few geographical areas and then extrapolates. It’s worth looking at. I can’t find the relevant bits right now.
https://www.ncbi.nlm.nih.gov/pubmed/21794183

 

Fine, but where is the commitment in the name "Action for ME" to research?

I am in no way saying that AfME are perfect, they are not, but the particular argument being used is like complaining about a butchers not having the same selection of vegetables that a greengrocers might have - technically accurate but unrealistic.

 

My understanding was this paper only covers a few (3 or 4) area health authorities.
My point really is :
How can the government/NHS budget for proper care of ME patients without mining their databases to get the accurate objective measure of the ME/CFS patient numbers to be funded and appropriate care supplied?

I checked my electronic medical records and I am down as having CFS.....I know that the GP practice views me as having ME/CFS (post infectious) but still can't come up with a treatment plan (of course) after 14 years. I have no expectation that they will to be honest.

Surely though this is "an unmet need" which has been ignored for years?

 

This study looked at incidence using GP databases (though not prevalence I think)
https://journals.sagepub.com/doi/full/10.1177/0141076817702530

 

I think an important point of the Nacul study was that definition of ME is so uncertain that you have a tenfold range of possible prevalence and in order to know what prevalence is for any given set of criteria you have to re-check each case because the raw data on records will be wildly inaccurate. There was another study in the States that indicated that many more people are diagnosed with ME/CFS by their doctors than actually fit criteria.

As a practicing specialist I do not think one actually needs these data trawls. If people are being referred with conditions for which you do not have enough resources you need to organise more resources. And the NHS has no strategy for providing resources on the basis of calculated need anyway. Each hospital appoints whoever the managers think they are going to get income for.

 

I haven't seen this before....v. interesting and I aim to read later..............although those 2 authors PD White and E Crawley warns me that my energy levels will need to be in better state before I look

Plus I noticed PD White using Queen Mary as his location even in his latest paper in 2019...................I thought he'd retired and hence couldn't get PACE raw data........???

.Apologies I've been pretty much out the loop this last year so I guess I missed this discussion before?

 

Thank you for that information.....startling.

Since I obvs don't know the details of processes used by NHS, the more I get to hear the more Kafka-esque it gets.

What are all databases used for?