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

Keeping bureaucrats employed.

 

Thanks Natalie.

Ed Scully did say that he has a couple of friends and a, not immediate, family member with ME, and seemed to grasp that it is not a "trivial" disease.
He seemed somewhat gobsmacked, when Nina Muirhead outlined the BPS content of the current CPD module for GPs and the fact that head of RCGP refuses to alter it until NICE publishes new GDL.

He also mentioned that he was an academic prior to Civil Service. So it would be good to draw his attention to the Wilshire paper on PACE reanalysis etc. @dave30th is probably already on this.

 

There is the difference in expenditure, staff numbers. Invest in ME doesn’t try/ have means to be anymore than a research charity with a tiny bit of advocacy with their 2-3 staff, afaik all unpaid and they host imo a superior biomedical research conference. Which seems punching above their resource.
Action for ME are taking on role of national representative charity with that structure, trustees, staff and salaries and in uk ME terms have access to most cash, average £1m. I think that there Is legitimate concern about the bang for the buck of the charity given the extremely limited cash floating around in our field for research in the UK , for whatever reason people think that Is,, as well as other concerns around It’s direction, advocacy methods and performance, this past decade for example in the post pace era.

I take the point that AFME and Iime are apples and oranges but I actually think, aside from potential for more success with their staff &salaries, they also raised £100 000 in a snap, 2 days possibly, last Xmas, whereas MEA take much longer and don’t raise quite that. So there’s big potential there to raise research funds more than 1x per year for specific causes if they can focus more on good science plus I think that i Saw .... or did I dream .,.. mea say they are investing £200 000 / year on biomedical research from an income of £330 000 , still providing a mag & a lot of good info and a type of support service . Obviously Dr Charles Shepherd doesnt Take salary and AFME seem to employ specialists in welfare etc but even so

 

I’m reading the MEA magazine. It says at the August trustees meeting, they provisionally agreed to fund two new research grants - “one covering illness management and one laboratory based” plus continuing to fund all the basic running costs at the ME biobank for the next two years. This will involve around £200,000. However, that doesn’t mean they spend £200,000 on research out of a total income of £330,000 each year.

 

Just being devil's advocate.

How much was donated to the Clare Francis Research Fund?

"research-related activity" is presumably a superset of directly funding research, and could include advocacy endeavours promoting research, etc. All such money raised should be shown to have very definitely gone towards promoting research though, and a non-trivial component of it (50%+ maybe?) have gone toward directly funding research.

It would be very disappointing if "research-related activity" was of very woolly scope, and included things most people would normally exclude from such a description.

Is my thoughts on it.

 

Thanks for the clarification. It will be interesting to see what management stuff they are going to fund..
But there’s is still that level of current research funding with a known quite low income, And much lower than AFME. im not a member of either charity to know really enough to compare if AFME is particularly different, superior on the support it offers. I also note from the staff list they have 4people listed under media/communications whereas I suspect mea have 2, 1 not full time, mea has a low paid funding assistant, AFME list 6 people in that category

 

I looked at the paper and they chose the areas to allow the figures to be generalised. The 0.2% prevalence of Fukuda or icc is at low end of Usual figure, 130 000 if applied to 65m Uk population. That already exceeds MS and puts us as a sizeable population, also affecting people from children through to prime years, Also Causing high levels of disability in a significant portion although obviously with different disease. I think that the Information is already out there, we are just being buried by the non disease /behaviourally perpetuated, with treatment interpretion of our “situation”. Obviously the figures might be higher but I don’t think it helps to really broaden out criteria to boost figures because then we start to possibly includes people less sick and with different stories.

the nihr is responsible for the management of illness research and I think I saw that it was they who funded the awful work at Manchester which formed the rcgp e-guidance which basically approaches CFS as fatigue and symptoms caused by deconditioning. Worryingly they were reviewed as fit for purpose in 2018. In some quarters They just erased the problem of 150 000 Ill people to treat and care for by saying they weren’t really ill.

 

One for @dave30th perhaps?

 

Thank you for the information, it always helps me. Yes Cinders66 you make great points. I am not familiar with the awful Manchester work re RCGP e-guidance but totally feel that this hijacking of the ME issue by the BPS lot is the real nub of this problem.

I'm really hopeful that David T is doing his stuff in getting the UK delusional cloud created by the BPS model kabal to be dispelled and enable the amazing International ME research being done Internationally by Ron David, Maureen Hanson, Jarred Younger, etc, etc to be seen and heard by the UK Medical community.

I am convinced that's only a matter of time...........but am I being delusional?

 

https://www.actionforme.org.uk/uploads/images/2019/10/action-for-me-annual-report-2018-2019.pdf

Prof Stephen Holgate CBE, FMedSci

 

According to the annual report, there were these costs associated with the research expenditure that were paid for by the general/unrestricted fund rather than the research fund:

Governance costs as 1,036
Admin costs finance below 1,786
Property management 915
Office management 7,875
IT admin costs 756

12,368

https://www.actionforme.org.uk/uploads/images/2019/10/action-for-me-annual-report-2018-2019.pdf

 

Thought I'd better set the record straight. I did in fact get a very helpful reply from Clare Ogden re this on 7 Oct, but there's rather a lot going on in my life right now and I missed this! Thankfully others picked up on it anyway.

 

£15,609
raised by 52 supporters
https://www.justgiving.com/fundraising/action-for-me-clare-francis-research-fund

 

videos for agm now on youtube

https://www.youtube.com/watch?v=CgVnnnGffhM

https://www.youtube.com/watch?v=wbqhF1zNzOA

[eta DT around 48]

https://www.youtube.com/watch?v=ChHNlUaRVco

 

I enjoyed @dave30th bit so much I did a transcript