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

[Jonathan Edwards]

What are all databases used for?

Keeping bureaucrats employed.

 

[MEMarge]

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.

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.

 

[Cinders66]

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 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

 

[Dolphin]

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.

 

[Barry]

How can I donate to M.E. research?

Thanks to the generosity of our donors, Action for M.E. is able to invest in pilot research projects that will help further our understanding of the biology of M.E. We must keep searching for the answers.

Donations to our Clare Francis Research Fund are only ever used to fund our research-related activity.

https://www.actionforme.org.uk/reso...how-can-i-donate-to-me-research/?c=c_db&f=178

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.

 

[Cinders66]

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.

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

 

[Cinders66]

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?

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.

 

[Annamaria]

One for @dave30th perhaps?

 

[janice]

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.

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?

 

[Cinders66]

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

Sonya Chowdhury’s Chief Executive review
In 2018 – 2019, as we hit the halfway point in our 2016 – 2021 strategy, I look at what we have achieved as the largest M.E. support charity in the world. Working in partnership with many others, we are trailblazing for people with M.E.

Action for M.E. is the vanguard of essential information and support services, when people with M.E. need them most. In July 2018, we had funding confirmed from trusts and foundations, including the Henry Smith Charity, for our pilot regional advocacy service, something we’ve been trying to secure for a number of years.

Jonah Grunsell’s Chair report
Sonya Chowdhury Chief Executive
contact your MP about our campaigns, or come to one of our events. The time, energy and trust you invest in us enables us to reach even more people with M.E. who need our support. Thank you.
Thanks to the generosity of our supporters, this is the second consecutive year that Action for M.E.’s income has passed the £1 million mark.
More than 12% of it was donated in just one week, to our Big Give Christmas Challenge 2018 campaign.

As a result of workshops held at the conference, the CMRC has set up four working groups focusing on ‘omics and big data; immunology; mitochondrial biology; and medical education, who are already engaging with medical schools about their training on M.E.

“I wanted to offer you my personal thanks for all the effort and dedication your team put into making our fifth CMRC conference such a success. It helped greatly in bringing together the researchers, patients and carers in a unique way which was particularly evident in the Research Priorities workshop. I know we have much to do, but meetings like we have just experienced gives one the energy to keep moving forward.”

Prof Stephen Holgate CBE, FMedSci

 

[Dolphin]

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.

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

 

[Barry]

I've emailed.

I had a recent success so thought I'd have a go .

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.

 

[Sly Saint]

How much was donated to the Clare Francis Research Fund?

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

 

[Sly Saint]

videos for agm now on youtube




[eta DT around 48]

 

[Trish]

I thought she said Tamiflu helped when she had a bad bout of flu while also having ME, so presumably it was dealing with active infection. I don't see how anyone can know for sure whether ME improving after such an infection and treatment was caused by some effect of the body fighting the flu, the treatment, or what...

 

[Sly Saint]

I enjoyed @dave30th bit so much I did a transcript

Hi, my name’s David Tuller.

I’m probably the only American here, but I’m a public health academic from University of California Berkley, and also a journalist and so for about the last three or four years I have been doing my best to expose just how horrible the research is that these guidelines are based on.

So, when we talk about PACE, PACE is now used at UC Berkley in epidemiology seminars as a case study of horrible research.

From the perspective of my colleagues at Berkley and other people who have signed open letters that I have written, last summer we put together an open letter that was signed by 116 academics and experts from around the world to the Lancet demanding an independent investigation and pointing out that this is just illegitimate research. And it really borders on research misconduct. I’m not an official person to make that determination, but from my perspective it meets a lot of thresholds for research misconduct particularly in the fact that 13% of the participants met an outcome threshold for physical function at baseline before they even entered the study, because of the outcome swapping that was done during the trial.


This stuff is so ridiculous and so absurd and there’s obviously a big cabal of editors at the Lancet, at the BMJ. I’m now trying to get the Lightning Process trial retracted; in that study the investigators recruited more than half of the participants before they registered the trial, they swapped their primary and secondary outcomes after collecting that data, and then they didn’t mention this in the published trial. They published it as if it were a completely prospective trial. The BMJ, I organised an open letter, 50 people, I complained. The BMJ has published a massive correction clarification and they asked the investigators whether or not they were biased by the findings that they knew were positive from their original secondary outcome that they made their primary outcome. The investigators said no, they weren’t biased, so the BMJ said oh no problem. And they republished the trial with exactly the same bogus findings that they did in the beginning.

This is really, really outrageous. And the NHS is complicit, the journal editors are complicit, the universities are complicit, and from my perspective as an American academic, and from the perspective of my colleagues at American universities all looking at this can see research misconduct of a really egregious nature. And so UK science is really having an issue at least the Lancet and the BMJ really are suffering some reputational damage from this kind of stuff. It’s just completely unacceptable. The studies involved that are not, I wouldn’t call them research misconduct, but basically all the evidence for these treatments are from open labelled studies, with subjective outcomes. When the objective outcomes fail the researchers ignore them and pretend they don’t exist or they just dismiss their objectivity to begin with. That’s exactly what happened in PACE. All the outcome measures failed to match with what the reports of subjective findings.

The researchers had invalidated their own objective findings and ignored them. This is completely unacceptable. We do not approve pharmaceuticals based on studies in which we give people treatments, tell them that they are getting and then ask them at the end oh do you feel better. And if the objective outcomes fail we ignore them.

That’s not how we do pharmaceuticals and it’s not how we should do these kinds of interventions. It’s a disgrace. And somebody in the UK medical and academic establishment has to start acknowledging that there has been a concerted effort for everybody to protect everybody elses ass.

Nobody wants to admit that they have been wrong for decades, nobody wants to take on Simon Wessely, nobody wants to take on Michael Sharpe, nobody wants to take on these investigators and say they are wrong. And I really, really do not understand it. I don’t really have a question, I just wanted to make sure that you folks in public policy and at the government level, understand why patients are so outraged. I’m not a patient, I don’t have a family member with this, this is purely for me a professional and academic and intellectual interest that I’ve taken on because I see how horrible the situation is and how bad the science is, and how poorly the academics, the journals and the universities are behaving including all the government agencies involved.


The Health Research Authority, did a review of the PACE trial, and ignored most of the problems with it and gave it a clean bill of health.

What they meant was that they filed all the proper papers, they filed for amendments. But it’s really not acceptable that all the agencies in the UK government are basically affirming this stuff. Once the letter was published last year with more than 116 signatures, 10 members of Parliament and 70 organisations from around the world the Medical research council issued a ridiculous statement saying well we think it’s fine because of Cochrane, Cochrane reviews have affirmed it. Well Cochrane are also involved. Cochrane just republished a ridiculous exercise review and rewrote its own guidelines in doing so. So somebody has to get to these people and say ‘no, this has to stop’.

So I don’t really have a question, sorry for my little speech but I felt that as an outside person I can say some of these things that it is hard for people here to say. Because I find that people in this system are kind of afraid to speak up. I’m an American , these people have no control over grants or anything for me, I leave and I go home, so I don’t really have to worry about public reaction here.