Petition: Opposing MEGA

[JohnM]

So it's all about setting up a massive biobank and lots of questionnaire data. That should use up the next decade nicely. And Crawley will have a lovely playground of questionnaire responses to do her p-hacking bad science on.

Then they might get around to doing some actual science if they can get the funding. I should be safely dead by then....

I can't like your post @trishrhymes .. I sincerely hope you will be alive to see the day this disease is understood and treatment available to all

 

[trishrhymes]

I can't like your post @trishrhymes .. I sincerely hope you will be alive to see the day this disease is understood and treatment available to all

Thanks @JohnM, at age 67 I am realistic about my own prospects. The reason I'm so desperate for a cure is for my daughter, aged 36 who has been ill with ME and mostly housebound for 19 years. That's why I get so angry at the BPS crowd.

 

[JohnM]

Thanks @JohnM, at age 67 I am realistic about my own prospects. The reason I'm so desperate for a cure is for my daughter, aged 36 who has been ill with ME and mostly housebound for 19 years. That's why I get so angry at the BPS crowd.

I hear you @trishrhymes, and I still sincerely hope you will be alive to see the day this disease is understood and treatment available to all of us .. am realistic about my own prospects also, and best wishes to you both.

 

[Barry53]

Are there any countries which are setting a consistently good example of biomedical research into ME? And if so which ones please?

 

[Snowdrop]

I was one of those non-members who did not join up here for a long time, and like yourself I did not want to become involved in the politics of ME; this bloody awful disease is difficult enough to live with, but enough is enough.

Absolutely. This disease is bloody awful. And having to be embroiled in politics of the disease because of ME deniers is cruel. Sadly, this is our reality. So thank you for being a patient who steps up despite the disability. Understandably I think we'd all rather be elsewhere.

 

[Sean]

So it's all about setting up a massive biobank and lots of questionnaire data. That should use up the next decade nicely. And Crawley will have a lovely playground of questionnaire responses to do her p-hacking bad science on.

 

[AndyPR]

Are there any countries which are setting a consistently good example of biomedical research into ME? And if so which ones please?

Norway and the US? I don't believe that any countries government is setting a good example but, from my limited viewpoint, it would seem that those two countries are producing the most promising research. In the US though, in general, it's from private sector groups running mainly on patient donations.

There seems to be enough elsewhere that I'm of the view that here in the UK, while we need to support the good biomed UK researchers (currently IiME in the main), our main efforts should be to fight against any further pseudo science that the BPSers attempt to produce.

Even if MEGA absolutely confounded my expectations and was likely to produce solid biomedical results, look at the likely timescales, we wouldn't see anything biomedically from them for 5 years at best, most probably longer, whereas

Dr. Lipkin recently stated that he believes that we can solve ME/CFS in 3 to 5 years provided the resources are made available, see Cort Johnson’s impressive article about Dr. Lipkin’s talk at a recent Simmaron Research event.

see http://microbediscovery.org/ for source of that quote. I know who I trust.

 

[Snowdrop]

Griffiths University in Australia seems to be producing useful research also: https://app.secure.griffith.edu.au/...test-for-chronic-fatigue-syndrome-on-its-way/

 

[slysaint]

Are we looking at a further 2+ years (minimum) to get the bioresource set up

Think it will be longer than that as if I remember (from the bit of the AfME AGM) I watched once they've recruited the Advisory group, and applied for/got funding , the actual recruitment won't start for another year from now.

 

[AndyPR]

Scans of Chairmans message and pages 1 and 2 of MEGA article from ME Essential newsletter.

 

[charles shepherd]

I have been busy all day with other work and have not therefore had time till now to read through some the large number of postings that have been made on all the different topics on this thread since late last night

So I have written a few quick points relating to questions and complaints that concern me on the postings that I have looked at so far today

Apologies for not answering every question and complaint - I just don't have the time to do so tonight!

IS THERE AN ME RESEARCH GROUP?

There is a clinical and research study group that relates to Ramsay or London described/defined ME: The Melvin Ramsay Society

Our membership includes (or did include) a number of very notable doctors who were all interested in or involved in research into Ramsay or London described/defined ME

Membership includes/included Dr Melvin Ramsay, Dr Betty Dowsett, Professors Peter and Mina Behan, Professor John Gow, Dr Abhijit Chaudhuru,Profesor Ted Dinan, Dr Gordon Parish, Dr John Dadswell, Dr Nigel Speight, Dr William Weir, Profesor Derek Pheby...

Unfortunately, new doctors have not come forward with the same interest or enthusiasm for researching ME as a distinct clinical entity and a significant proportion of the MRS membership has either retired or sadly died over the past ten years

So the MRS is no longer an active research organisation

As one of the few MRS committee members still working, I would be happy to try and get things moving again - but I do need active support and practical help if this is going to be achieved

My voluntary workload is already more than I can comfortably cope with and I just cannot add reviving the MRS to this without meaningful practical help and support from my medical colleagues

The MRS does not have a website but here is a link to one of our meetings:
http://www.meassociation.org.uk/2007/04/melvin-ramsay-society-meeting-friday-20-april-2007/

MEA WEBSITE DIRECTORY OF NHS SERVICES

We have listened to what people are saying and I have been working on the inclusion of some information about CBT, GET and Pacing at the start of this Directory with Tony this morning

When Tony is next on the site there will be an additional item of background information covering CBT, GET and Pacing

MEA directory of UK clinics and services for ME/CFS:
http://www.meassociation.org.uk/spe...uk-this-page-last-updated-on-27-october-2016/

CMRC AND MRC

The MRC obviously has a close and very supportive role in relation to the work of the CMRC and the research conferences that we now hold each year - mainly due to the fact that the CMRC basically too over from the MRC Expert GRoup on ME/CFS Research

On the whole I think this relationship is fairly clear and open - including the fact that we hold CMRC meetings at the MRC, a member of the MRC neuroscience staff who deals with ME/CFS research attends as an observer, and the MRC provides some financial support to the CMRC conference.

This information is all there in the public domain and I would far prefer to see the MRC working closely with any group or groups of the ME/CFS research community than not having any regular contact at all

But if anyone has any concerns about possible conflicts of interest between the CMRC and MRC, either on an individual basis, or the two groups as a whole, then I would encourage them to raise their concerns with the MRC - so that a clear answer can be provided and placed in the public domain

When I was a member of the MRC Expert Group on ME/CFS Research we all had to declare any conflicts of interest and this information was published on the MRC website

I think the Board of the CMRC should do the same and I will raise this with the Board when we next meet

I would also be very happy to declare any taxable earnings and fees relating to work that I do in relation to ME/CFS as part of such a process - if this was thought to be helpful in making our positions clear

MRC website section on ME/CFS, including work of the Expert Group on ME/CFS Research and conflicts of interest:
http://www.mrc.ac.uk/funding/science-areas/population-systems-medicine/cfsme/

MRC highlight notice relating to immune system dysregulation, pain and neuropathology of ME/CFS:
https://www.mrc.ac.uk/funding/how-we-fund-research/highlight-notices/cfs-me-highlight-notice/

Brief background notes from the MEA on the CMRC:
http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/

MEGA STUDY

As I've been stating on numerous occasions, the detailed planning of the MEGA study, along with the protocol that will be submitted for funding in 2017, is still being discussed - so a whole range of decisions relating to patient selection and assessment, which are obviously of major concern to both the ME patient community and the MEA, are not yet anywhere near being finalised

Details of the advisory group and a new MEGA website will be announced shortly

I wwant to continue to play a constructive role in this development process as a charity representative - this will be critical and questioning where necessary

I am not part of the MEGA planning group - so my views are purely advisory

Once the protocol has been decided by the MEGA planning group, MEA trustees will decide whether this meets all their concerns and questions relating to patient assessment, patient selection, and the inclusion of distinct cohorts such as those with severe ME/CFS, and use of the ME Biobank samples

If we believe it does then we will support the MEGA study moving forward

If we are not happy with what is being proposed we will not provide any further support to the MEGA bid

As people have noted, the November issue of ME Essential ( which members should now have) contains an Editorial by Neil Riley (or Chairman) on MEGA and a summary of what was known about the study design when the copy was being prepared - this was about 2 weeks ago

We are asking for membership feedback on what is known so far and we will be consulting our members again in February when there should be more infromation available about patient assesment and selection etc

As to how we ask our members to comment on the final protocol, and whether they want their charity to support the bid for funding, thisd has still to be decided

But some form of membership yes/no vote is clearly one possibity

We welcome the views of our members on this as well

ME BIOBANK FUNDING AND THE NIH GRANT

The ME Biobank is funded by the MEA Ramsay Research Fund and I am Chairman of the ME Biobank Steering Group - so we obviously have a close and supportive working relationship with the Biobank

We are also keen to progress and enlarge this vital new item of ME/CFS research infrastructure here in the UK

To receive a £1 million research grant from the NIH in America was a tremendous endorsement of the quality of the work (and the blood samples) that has been done so far and preliminary discussions have been taking place with research funding organisations, including government research pots, regarding sources of funding that will help to secure the long term future of the Biobank

I will go so far as to say that we have not been successful with one (non governmental) approach where we felt there was a reasonable chance of success

But I hope people will appreciate that I cannot go into more detail on a public forum about other options that are being considered

ME Biobank website:
http://cureme.lshtm.ac.uk

ME biobank opens for business - May 2016:

http://www.meassociation.org.uk/2016/05/uk-mecfs-biobank-opens-for-business-13-may-2016/

NIH grant to ME Biobank:
http://blogs.lshtm.ac.uk/news/2013/06/28/uk-mecfs-biobank-project-awarded-1-million-grant/

Constructive criticism is fine but please note that I am not wililng to respond to emails or postings that are aggressive or rude and it was sad to find that the PR moderators had to step in last night with a warning on another discussion that I was contributing to

Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[Jonathan Edwards]

No. We are planning to apply for funding in 2017 for the first stage of the study, setting up the world’s largest Bioresource of data and samples from CFS/ME patients. Our aim is to create a resource that all researchers all over the world can use. We will then apply for further funding for the subsequent omics-based stages of our study – searching for the biological basis to ME/CFS – once the Bioresource is set up.

Alarm bells ringing,

We already have a Biobank and it is struggling to get enough funds to maintain data collection because nobody seems to be interested in using the samples - probably because they have no grant funds to do the work.

So we have a resource that all researchers all over the world can use and they are not using it. When Chris Ponting was asked why they had to study so many cases he said that a funding body would expect that - that is not a scientific reason, it is a political one. My intuition is that 300 samples is a very good start for most of the questions that could be asked. I think people are playing games.

 

[charles shepherd]

We already have a Biobank and it is struggling to get enough funds to maintain data collection because nobody seems to be interested in using the samples - probably because they have no grant funds to do the work.

So we have a resource that all researchers all over the world can use and they are not using it. When Chris Ponting was asked why they had to study so many cases he said that a funding body would expect that - that is not a scientific reason, it is a political one. My intuition is that 300 samples is a very good start for most of the questions that could be asked. I think people are playing games.

Thanks Jonathan

I believe you are making a very important point about how big the sample size needs to be to get a meaningful result in this study

I have only met Chris Ponting on two occasions and he is obviously one of the experts who is new to ME/CFS research

But I have formed the impression from both personal contact and from his willingness to respond to questions on the blog that he did for MEGA that he is willing to listen to questions and criticisms and is very open about some of the uncertainties that surround a study of this type

 

[worldbackwards]

at age 67 I am realistic about my own prospects.

God, I'd kill to be 67. I've got another 40 years of this.

 

[charles shepherd]

We already have a Biobank and it is struggling to get enough funds to maintain data collection because nobody seems to be interested in using the samples - probably because they have no grant funds to do the work.

So we have a resource that all researchers all over the world can use and they are not using it. When Chris Ponting was asked why they had to study so many cases he said that a funding body would expect that - that is not a scientific reason, it is a political one. My intuition is that 300 samples is a very good start for most of the questions that could be asked. I think people are playing games.

God, I'd kill to be 67. I've got another 40 years of this.

Dr S will be 67 in a few weeks time…..but would happily turn the clock back a few years!

 

[worldbackwards]

Dr S will be 67 in a few weeks time…..but would happily turn the clock back a few years!

Not to be me you wouldn't.

 

[Graham]

I'm still running to catch up with the back story of ME research in the UK. Can anyone point me in the direction of info about the 5 biomed studies?

The full, official one is here.

https://www.mrc.ac.uk/documents/pdf/cfsme-current-projects/

 

[Barry53]

Scans of Chairmans message and pages 1 and 2 of MEGA article from ME Essential newsletter.
View attachment 18362 View attachment 18363 View attachment 18364

Is this really open access? Or is the word "open" being used a bit too freely here? Making data "available for researchers to use" is not necessarily the same thing at all - PACE did that ... but only to their chosen researchers! Do we have anything in writing from MEGA that data will be made openly available, whenever any results are published? It really is a vital distinction.

 

[charles shepherd]

View attachment 18367
Is this really open access? Or is the word "open" being used a bit too freely here? Making data "available for researchers to use" is not necessarily the same thing at all - PACE did that ... but only to their chosen researchers? Do we have anything in writing from MEGA that data will be made openly available, whenever any results are published? It really is a vital distinction.

Perfectly valid question

I'm sorry but I cannot prove the clarification you require

I am happy to add this to my list of questions for the planning group

CS

 

[Graham]

I did a comparison of funding for medical research between the USA and UK for 2011. The US economy is roughly seven times bigger than that of the UK, but it puts around 11 times as much as the UK does into medical research. In contrast, charities in the US raise 10c for every dollar of government money, only twice the amount raised by charities in the UK: 60% of the money raised by charities in the UK comes from the Wellcome Trust: in the US the Gates Foundation makes up a large chunk of the money raised there. In other words, the UK government is tight-fisted, the UK people give more to charity, and the Wellcome Trust is doing nothing for us, although it should.

In the UK state funding of research is split, roughly equally, between the Medical Research Council and the National Institute of Health Research. The latter has spent almost nothing on ME/CFS researh, but I gather is funding Crawley. When I checked the situation with them a few years back, their reasoning was that they supplied resources for ME/CFS research to use (but no doubt they charge!).

Unlike the NIH in America, neither the MRC nor the NIHR give any breakdown of spending in various medical areas, whereas the NIH set out their budgets for each area for each forthcoming year. However, the funds supposedly set aside for ME/CFS by the NIH have drifted into other areas, some has gone completely missing, and some was spent funding a series of experiments making rats swim until they nearly drowned, in order to study what fatigue did to muscles.

The 5 biomedical studies funded in 2012 by the MRC came to a total of £1.6 million, or around £320,000 each. The PACE trial costs must now be well over the £5 million originally set aside, with all their legal fees and appeals. The FINE trial cost over £1 million, and Esther Crawley's latest trial is likely to cost a similar amount. The numbers tell the story.

I forgot to add: in 2011, which is the year of this analysis, the MRC found £410,000 to investigate dog ownership and health.