MEA: Make M.E. Better campaign

[charles shepherd]

This is a sincere question: Are you confident that for CMRC-led research, if the underlying data truly shows ME to be a biological condition, then any published results will accurately reflect that, without fear or favour? This may sound like a leading question but it is not meant to be. I really need to understand this.

Simple answer is YES

People like Professor Stephen Holgate (Immunopharmacology at Southampton) and Prof Hugh Perry (Chair of the MRC Neurosciences Board) just want to get to the bottom of what is causing this wretched illness, how we can effectively sub-group people under the current ME/CFS umbrella, and how this information can then be used to find effective forms of treatment for the various clinical and/or pathological phenotypes

Identifying different phenotypes is what Stephen Holgate has been heavily involved with in relation to his main specialty, which is asthma. And this knowledge is leading to a much more focussed and individual approach to the treatment of asthma - as it is in breast cancer and a number of other conditions.

Asthma phenotyping: http://www.nature.com/pr/journal/v73/n4-2/full/pr20138a.html

 

[charles shepherd]

MEA website information on this research appeal:

http://www.meassociation.org.uk/201...hristmas-appeal-starts-today-9-november-2016/

Metabolomics diagram:

http://metabolom.cz/wp-content/uploads/2016/07/img-metabolomics.jpg

 

[Jo Best]

@charles shepherd I hope you take this as constructive feedback to MEA that I find the marketing of this appeal distasteful, given the fact that there are currently funds in the RRF that could cover the MEA grant for this study, and as it is an appeal timed for Christmas, when the straightened financial circumstances of patients/families are keenly felt.

In particular -

Making ME Better would be the best Christmas present thousands of sufferers and their families could ask for.

And I have it on the best authority (Dr Charles no less) that has a good chance of achieving that.

Yet your reply, which I don't doubt, rather suggests to me that this one study may not fulfill the promise to 'Make ME Better', which of course, I would dearly love before I die (my ME takes a progressive course).

"There are a number of research projects that are going to make significant demands on the funds that are currently held in the Ramsay Research Fund account over the next few years:"

 

[char47]

Unfortunately, I think there is a widespread belief, which is JUST NOT TRUE, that the majority of clinicians and scientists on the Board of the CMRC take the view that ME/CFS is a psychiatric or psychosomatic illness

That feels encouraging & sad/worrying at the same time.
I mean golly, if the majority aren't of this view then how on earth can a group of people allow the activities of those that do take that view go unchallenged. I mean I actually find that quite shocking. I had assumed that the reason the likes of the SMC FITNET press briefing wasnt being robustly countered AT SOURCE was because you were a lone voice there Dr S, but if there is a group of people then sorry, I mean no disrespect whatsoever to yourself as i know how hard you work for us all, but what the hell is going on? How can the devastating spin that the BPS fans put out about the condition (eg the FITNET press release), be allowed to go unchallenged?
And if you (plural) DO challenge it & attempt to counter it but are unsuccessful, then crumbs thats an even more sinister level of power & influence that the BPS lot have than even i was afraid of.

Sorry I know we're trying to get off the subject of the CMRC but I am feeling quite distressed to discover the true state of affairs. I was under the impression that the CMRC was made up of majority BPS fans + you + some scientists who aren't sure yet.

ETA my apologies. Many excellent scientists may well have their own views & it's unfair to expect them to also be good at robustly arguing against the prevailing view or against people who are incredibly slick at promoting their ideas & have links with the establishment. It's just that having been harmed by ignoring my body 'a la' CBT/GET & taken from mild to severe by it, it's hard not to feel let down by those who have the opportunity to fight for us. But thats an unfair feeling. And i certainly do NOT feel let down by yourself Dr S, quite the reverse.

 

[trishrhymes]

.... I had assumed that the reason the likes of the SMC FITNET press briefing wasnt being robustly countered AT SOURCE was because you were a lone voice there Dr S, but if there is a group of people then sorry, I mean no disrespect whatsoever to yourself as i know how hard you work for us all, but what the hell is going on? How can the devastating spin that the BPS fans put out about the condition (eg the FITNET press release), be allowed to go unchallenged?
And if you (plural) DO challenge it & attempt to counter it but are unsuccessful, then crumbs thats an even more sinister level of power & influence that the BPS lot have than even i was afraid of.

As I understand it, FITNET is nothing to do with the CMRC, though it is run by one of the members of the CMRC. The MEA and Dr Shepherd were not made aware in advance of the media blitz - they were nowhere near the 'source' and could not possibly have stopped it. Unfortunately the Science Media Centre has Wessley on its board and always promotes the psychosocial approach. It is then up to the media whether they bother to listen to the MEA and others.

 

[Cinders66]

That feels encouraging & sad/worrying at the same time.
I mean golly, if the majority aren't of this view then how on earth can a group of people allow the activities of those that do take that view go unchallenged. I mean I actually find that quite shocking. I had assumed that the reason the likes of the SMC FITNET press briefing wasnt being robustly countered AT SOURCE was because you were a lone voice there Dr S, but if there is a group of people then sorry, I mean no disrespect whatsoever to yourself as i know how hard you work for us all, but what the hell is going on? How can the devastating spin that the BPS fans put out about the condition (eg the FITNET press release), be allowed to go unchallenged?
And if you (plural) DO challenge it & attempt to counter it but are unsuccessful, then crumbs thats an even more sinister level of power & influence that the BPS lot have than even i was afraid of.

Sorry I know we're trying to get off the subject of the CMRC but I am feeling quite distressed to discover the true state of affairs. I was under the impression that the CMRC was made up of majority BPS fans + you + some scientists who aren't sure yet.

ETA my apologies. Many excellent scientists may well have their own views & it's unfair to expect them to also be good at robustly arguing against the prevailing view or against people who are incredibly slick at promoting their ideas & have links with the establishment. It's just that having been harmed by ignoring my body 'a la' CBT/GET & taken from mild to severe by it, it's hard not to feel let down by those who have the opportunity to fight for us. But thats an unfair feeling. And i certainly do NOT feel let down by yourself Dr S, quite the reverse.

I don't think the CMRC members view the illness outright as psychiatric or psychosomat, Esther Crawley doesn't apart from possibly the most severe it seems she might re diagnose as persistent refusal disorder. In U.K. It's the BPS / mind body, the mind is very important/behavioural treatment very important or even curative that's different to USA. So we have a group of researchers in U.K. Chalder, White, Moss Morris, Wealden, Deary, Crawley who think whatever the physical that behaviour is very good focus - to quote Wessely - "we are in the business of rehabilitation". And I DO think some on CMRC Holgate , Paul little an IBS researcher , Carmine pariante, Ed Sykes possibly Mark Edwards are sympathetic to the BPS and to the approach of tackling a fatigue spectrum over recognition of ME or SEID as valid CFS subgroups. I think few on the CMRC will have any objection to the study of fatigue plus 1 under a CFS/ME label or the trials of CBT /GET on kids in their proposed forms, the PACE trial, the U.K. press release on fitnet or will think the absence in terms of funding biomedical research is tragic enough to do anything radical about .

 

[char47]

As I understand it, FITNET is nothing to do with the CMRC, though it is run by one of the members of the CMRC. The MEA and Dr Shepherd were not made aware in advance of the media blitz - they were nowhere near the 'source' and could not possibly have stopped it.

Ah, yes of course, thanks for that. I think i did know that already but had forgotten, feeling a bit low & reactive today. will pop off n give myself a bit of a talking to

Am just so frustrated
as are we all. but thats no reason to not get my facts straight.
apologies to all. ETA esp @charles shepherd

 

[char47]

I don't think the CMRC members view the illness outright as psychiatric or psychosomat, Esther Crawley doesn't apart from possibly the most severe it seems she might re diagnose as persistent refusal disorder. In U.K. It's the BPS / mind body, the mind is very important/behavioural treatment very important or even curative that's different to USA. So we have a group of researchers in U.K. Chalder, White, Moss Morris, Wealden, Deary, Crawley who think whatever the physical that behaviour is very good focus - to quote Wessely - "we are in the business of rehabilitation". And I DO think some on CMRC Holgate , Paul little an IBS researcher , Carmine pariante, Ed Sykes possibly Mark Edwards are sympathetic to the BPS and to the approach of tackling a fatigue spectrum over recognition of ME or SEID as valid CFS subgroups. I think few on the CMRC will have any objection to the study of fatigue plus 1 under a CFS/ME label or the trials of CBT /GET on kids in their proposed forms, the PACE trial, the U.K. press release on fitnet or will think the absence in terms of funding biomedical research is tragic enough to do anything radical about .

I agree. Thats what i understand BioPsychoSocial to mean... ie psychosocial issues creating biological ones which can be cured by addressing thoughts/behaviour/environmental issues. And i'm sure you're right about the rest. And i think thats half the trouble, that none of the ones that are 'sympathetic' to the BPS model.... have any idea of the HARM the approach does to those who actually have ME rather than fatigue+1

 

[char47]

Anyway back to the new MEA Reasearch.... @charles shepherd do we know when the research would be likely to go ahead (assuming funds can be raised) & how long it would take (approximately)? I'm guessing it might be shorter than many studies due to having the samples already taken & the clinical info already gathered?

 

[charles shepherd]

@charles shepherd I hope you take this as constructive feedback to MEA that I find the marketing of this appeal distasteful, given the fact that there are currently funds in the RRF that could cover the MEA grant for this study, and as it is an appeal timed for Christmas, when the straightened financial circumstances of patients/families are keenly felt.

In particular -



Yet your reply, which I don't doubt, rather suggests to me that this one study may not fulfill the promise to 'Make ME Better', which of course, I would dearly love before I die (my ME takes a progressive course).

Jo

I'm sorry but I just do not understand why you find it so distasteful for us to launch an Xmas Appeal to raise monery for a much needed metabolomic research study here in the UK

As I have already explained, the MEA RRF is committed to funding the ME Biobank - which is now a vital part of the UK ME/CFS research infrastructure

Over the next 15 months this will take around £55,000 out of the RRF

And if we are unable to find a solution to long term funding for the ME Biobank, this could well involve another £40,000+ in 2018

We have ring fenced a minimum of £60,000 to help fund a clinical trial of Rituximab here in the uk. This figure could be increased if a phase 3 clinical trial here in the UK is put together and more co-funding is required.

We are keen to start funding PhD students (a small grant relating to muscle research was agreed only yesterday), research meetings (we are funding a closed research meeting in Oxford), as well as other ways of encouraging undergraduate and postgaduate students to get involved in ME/CFS research (eg - we funded four students to attend the CMRC conference in Newcastle)

I am about to start dealing with a very promising new biomarker research grant application that will cost the RRF around £45,000

I have three other research grant applications - a clinical trial, some dietary research and an application from overseas that came in earler this week) that are progressing. In total, these are likely to cost in total anything up to £125,000 if approved.

And we have some 'lose ends' from existing RRF research grants that could cost around £15,000

At this point the RRF pot will be empty...….

We want to get this metabolomic study in Oxford started as soon as possible and there are people out there who are keen to donate to specific projects - we have, in fact, already received some generous donations

And existing RRF money will be used to top up the donations to make sure this research can start in the New Year

So I do not think we are doing anything wrong at all

 

[charles shepherd]

Anyway back to the new MEA Reasearch.... @charles shepherd do we know when the research would be likely to go ahead (assuming funds can be raised) & how long it would take (approximately)? I'm guessing it might be shorter than many studies due to having the samples already taken & the clinical info already gathered?

The aim is to get started early in the New Year

I think we are looking at around 12 months from start to finish

 

[Jo Best]

@charles shepherd perhaps you misunderstand because you didn't include the point I made when you quoted me.
I know that people are very willing to donate to specific projects. I initiated the Let's Do It for ME campaign with fellow sufferers of severe ME in 2011 for that reason - to raise a target amount for the foundation study of the Invest in ME Research Centre of Excellence translational biomedical research strategy, followed by crowdfunding next phases of the gut research as well as a UK clinical trial of rituximab, preceded by research on B cells as the aim is to add value to the Phase III multi-centre trial currently in progress in Norway. My distaste is at the implication that this study will 'Make ME Better'. It's not just semantics. It's a style that makes me feel it's playing on my hopes for a cure. You've described in your reply a few more projects that MEA plans to spend its donations on, which serves to prove my point. Don't worry about replying. I know I find it hard to express myself clearly. I'll just repost what I'd said here.

charles shepherd I hope you take this as constructive feedback to MEA that I find the marketing of this appeal distasteful, given the fact that there are currently funds in the RRF that could cover the MEA grant for this study, and as it is an appeal timed for Christmas, when the straightened financial circumstances of patients/families are keenly felt.

In particular -

Making ME Better would be the best Christmas present thousands of sufferers and their families could ask for.

And I have it on the best authority (Dr Charles no less) that has a good chance of achieving that.
Yet your reply, which I don't doubt, rather suggests to me that this one study may not fulfill the promise to 'Make ME Better', which of course, I would dearly love before I die (my ME takes a progressive course).

"There are a number of research projects that are going to make significant demands on the funds that are currently held in the Ramsay Research Fund account over the next few years:"

 

[trishrhymes]

I wonder, @Jo Best whether your distaste arises specifically from the title of the fundraiser 'Make ME better' which perhaps suggests that its intention or even expectation is to find the cure - rather than to take another small but significant step towards understanding ME. Are you worried that this raises hopes too much?

Edit: my post crossed with yours, so I'm probably repeating what you just said. I admit I found the title a bit over the top, but it does catch the attention.

 

[Jo Best]

Snap Trish Re. you last comment, yes I realise it''s just like advertising that's done by other medical research charities, I just found this to be quite a specific promise of cure, which under the circumstances, disturbs me.

I admit I found the title a bit over the top, but it does catch the attention.

 

[trishrhymes]

donated

 

[Artstu]

Snap Trish Re. you last comment, yes I realise it''s just like advertising that's done by other medical research charities, I just found this to be quite a specific promise of cure, which under the circumstances, disturbs me.

I think I might just have to ask for my money back. ..

 

[Jo Best]

I think I might just have to ask for my money back. ..

Don't get me wrong, I'm only too pleased to hear that MEA plans to spend donations. It had £423.6k to be held for future use at the end of December 2015 - http://apps.charitycommission.gov.u...steredCharityNumber=801279&SubsidiaryNumber=0

I don't think anyone's asked for their money back from the 2013 MEA rituximab appeal, when the funds were announced as ringfenced for two years, and then extended indefinitely two years later when no researchers had come forward with a grant application, and now Charles Shepherd has reiterated that those funds will retained pending the possibility of a CMRC-led multi-centre UK trial after the Norwegian results are published (which should be in 2018 I think).

Restricted funds held as custodian in July 2013, the MEA undertook to allocate a basic fund of F50,000 from within its restricted fund reserves for a period of 2 years, to contribute towards a suitable project to further investigate the applicability of the drug Rituximab as an effective treatment for some ME/CFS patients. It had received an additional donation to be held specifically for this purpose, and invited further such donations. The sum held on behalf of others for this purpose, at the end of 2015, was F9,477. With no such research be taken forward during 2015, as progress in this area of research was generally delayed internationally, it was decided to continue the undertaking to hold the funds for the designated purpose. The board's intention was announced in its ME Essential magazine, on the website and on Facebook. No donor came forward to enquire about their donation. Factors affecting progress in international research on this subject are regularly reported to the membership.

http://apps.charitycommission.gov.uk/Accounts/Ends79/0000801279_AC_20151231_E_C.pdf

 

[Deepwater]

Simple answer is YES

People like Professor Stephen Holgate (Immunopharmacology at Southampton) and Prof Hugh Perry (Chair of the MRC Neurosciences Board) just want to get to the bottom of what is causing this wretched illness, how we can effectively sub-group people under the current ME/CFS umbrella, and how this information can then be used to find effective forms of treatment for the various clinical and/or pathological phenotypes

Identifying different phenotypes is what Stephen Holgate has been heavily involved with in relation to his main specialty, which is asthma. And this knowledge is leading to a much more focussed and individual approach to the treatment of asthma - as it is in breast cancer and a number of other conditions.

Asthma phenotyping: http://www.nature.com/pr/journal/v73/n4-2/full/pr20138a.html

If Professor Holgate is not pro the BPS model, why is he quoted on the BBC website as lauding the FITNET study? viz: "Prof Stephen Holgate, from the Medical Research Council, said: "CFS/ME is an important disabling condition.
"It has been chronically underfunded for years; patients deserve high-quality research like this."

 

[slysaint]

This is all a bit deja vu;
http://forums.phoenixrising.me/inde...-to-quit-the-uk-research-collaborative.41010/

 

[Barry53]

After reading all these posts to and fro in here, my head feels like it is in a cement mixer. And I am not the one with ME.