MEA: Make M.E. Better campaign

[UKmum]

Thanks - it's clearly a very thankless task sitting on the Board of the CMRC as far as most ME/CFS internet discussion groups are concerned

So it's great to just occasionally find that someone appreciates the reason why I have always been keen to join committees and groups to put forward the patient point of view to people I do not always agree with

Put very simply, I do not believe it is sensible for charities who represent people with ME/CFS to say that they will not join a group or committee at the DWP, MRC, DoH, NICE etc when the organisation has enormous influece when it comes to making crucial decisions about people with ME/CFS

Because complaining/moaning/shouting from outside the tent usually has little or no effect whatsoever

So I won't be resigning from the Board of the CMRC...…..

And I will continue to support the AIMS of the MEGA study because I believe that Stephen Holgate has brought together a group of world class -omic experts who are new to ME/CFS research.

And if we can get the protocol right, especially in relation to patient selection, then this research (which is NOT psychiatric research as is being portrayed by some people) could provide some really useful information on sub-grouping that would help to separate people under the very unsatisfactory NICE 'on size fits all' treatment model of ME/CFS

If we can get the protocol and planning group right for MEGA then the MEA will endorse the research grant application when it is made in 2017

If not, we will not endorse it

I think many people appreciate your efforts to be working on the inside and in a position to prick the conscience of the CMRC. Not an easy road but hopefully not a completely thankless task. I for one thank you.

 

[BurnA]

Put very simply, I do not believe it is sensible for charities who represent people with ME/CFS to say that they will not join a group or committee at the DWP, MRC, DoH, NICE etc when the organisation has enormous influece when it comes to making crucial decisions about people with ME/CFS

Because complaining/moaning/shouting from outside the tent usually has little or no effect whatsoever

So I won't be resigning from the Board of the CMRC...…..

Charles I can understand where you are coming from but I'm curious :

Has the MEA ever or recently taken a memebers poll on whether they should be part of the CMRC ? Is this something you would consider?

I am not a memeber, nor am I in the UK so I am just asking out of curiosity as it seems to be a divisive issue, at least here.

 

[Barry53]

Put very simply, I do not believe it is sensible for charities who represent people with ME/CFS to say that they will not join a group or committee at the DWP, MRC, DoH, NICE etc when the organisation has enormous influece when it comes to making crucial decisions about people with ME/CFS

Because complaining/moaning/shouting from outside the tent usually has little or no effect whatsoever

So I won't be resigning from the Board of the CMRC...…..

I do fully agree with your stance here. Any diplomatic role especially requires talking to those you disagree with. The importance of maintaining a dialogue with a person or organisation, is orthogonal to whether we agree with or like them.

And if we can get the protocol right, especially in relation to patient selection, then this research (which is NOT psychiatric research as is being portrayed by some people) could provide some really useful information on sub-grouping that would help to separate people under the very unsatisfactory NICE 'on size fits all' treatment model of ME/CFS

To be fair here, the fears of someone like myself, is that the person in the co-pilot seat has an appalling track record, and it is terribly hard for many people to trust (it is all about trust) that MEGA would not be corrupted by that. I would love to support MEGA (so many people would). I personally would not have a problem if there was a psychiatric contingent on the MEGA team, provided it was high-integrity with a track record of seeking the truth, however that panned out.

And I do very much appreciate and respect your endeavours.

 

[charles shepherd]

Charles I can understand where you are coming from but I'm curious :

Has the MEA ever or recently taken a memebers poll on whether they should be part of the CMRC ? Is this something you would consider?

I am not a memeber, nor am I in the UK so I am just asking out of curiosity as it seems to be a divisive issue, at least here.

We cover the CMRC quite regularly in the MEA membership magazine - the November issue contains some conference reports and a new Management File based on an extremely good Workshop on POTS that was led by Prof Julia Newton and people from the POTS UK medical charity

There is a full page on the MEGA controversy in the November issue of our magazine plus an Editorial dealing with objections that was written by our Chairman

The article asks for feedback from our members and we will consult with them when it comes to deciding if we are going to endorse the final protocol for the study in the New Year

I take the view that internet discussions on controversial topics do not always represent the views of our overall membership

In relation to MEGA, I think we have had about a dozen emails and phone calls - the majority being from non members

We have had a handful of MEA members expressing opposition to the MEGA study and I think I am right in saying that one member has decided not to renew a membership subscription

I think we have asked about the CMRC in our website surveys

If I have time later I will check…..

 

[charles shepherd]

We cover the CMRC quite regularly in the MEA membership magazine - the November issue contains some conference reports and a new Management File based on an extremely good Workshop on POTS that was led by Prof Julia Newton and people from the POTS UK medical charity

There is a full page on the MEGA controversy in the November issue of our magazine plus an Editorial dealing with objections that was written by our Chairman

The article asks for feedback from our members and we will consult with them when it comes to deciding if we are going to endorse the final protocol for the study in the New Year

I take the view that internet discussions on controversial topics do not always represent the views of our overall membership

In relation to MEGA, I think we have had about a dozen emails and phone calls - the majority being from non members

We have had a handful of MEA members expressing opposition to the MEGA study and I think I am right in saying that one member has decided not to renew a membership subscription

I think we have asked about the CMRC in our website surveys

If I have time later I will check…..

Here's a website question on the CMRC:

• 
  Should ME/CFS charities that fund/support research be joining the UK Research Collaborative?
  
  • Yes – definitely (39%, 241 Votes)
    
    
  • Yes – with caution (31%, 190 Votes)
    
    
  • Not sure (9%, 54 Votes)
    
    
  • No opinion (1%, 7 Votes)
    
    
  • Probably not (5%, 29 Votes)
    
    
  • Definitely not (15%, 101 Votes)
    
    
    Total Voters: 622
    

 

[charles shepherd]

I'm happy to answer questions on the CMRC (time permitting) but would it be possible to keep this discussion focussed on the new UK research initiative to do a metabolomic study at the mitochondrial research unit in Oxford?

There are endless discussions elsewhere on the CMRC on PR - most of them repeating the same complaints (which I am well aware of!) and asking me to resign from the Board (which I am not going to do!)

 

[eafw]

I'm happy to answer questions on the CMRC (time permitting) but would it be possible to keep this discussion focussed on the new UK research initiative to do a metabolomic study at the mitochondrial research unit in Oxford?

There are endless discussions elsewhere on the CMRC on PR - most of them repeating the same complaints (which I am well aware of!) and asking me to resign from the Board (which I am not going to do!)

I would like to follow up on your willingness to talk about the CMRC - can we get another thread started for that ?

I'll also ask for my posts above to be deleted as they derailed in a way I didn't intend and I can easily repost an edited version in support of the MEA appeal, which is what belongs on this discussion.

 

[trishrhymes]

This sounds like a great study and one I have no hesitation supporting.

If only all studies were so clear cut !

£50k seems like a relatively small amount for a metabolomic study of 300 samples run by multiple scientists over the course of a year, do we know if this is the total study funding or just the amount being raised now.

Would be nice to know too if there was any collaboration or discussion with other scientists ( Naviaux, Davis or Hansen) to ensure results would be comparable.

From what I understand the Naviaux study looked at over 600 metabolites at a cost of about £1000 per patient. Am I right in guessing that this new study which seems to be allocating more like £160 per patient will be cheaper because it will focus just on the metabolites that were found to be abnormally low or high in the Naviaux study?

@charles shepherd, is there any more detail available for those of us interested in the nitty gritty? And I wonder whether some of the apparently cheaper different methods used by the Melbourne study will be used where appropriate.

This being a purely laboratory science project rather than a clinical trial obviously means the requirements for protocol approvals etc are different, but I'd love to see a copy of the plan if there is one at this stage and if it's reasonable to ask. (I'm doing my best to learn more biochemistry at the moment and this would add to my motivation!) (and to my motivation to donate more)

 

[charles shepherd]

The simple answer is that the Oxford study is going to have some similarities and some differences to the Naviaux study - partly because Dr Karl Morten is involved in mitochondrial research, and he is now being funded by the MEA RRF to do mitochondrial (muscle) research in relation to ME/CFS

It would obviously be helpful to have some more details on what Dr Karl Morten and his colleagues will be doing in the form of a public information statement

I will ask Karl if he could put something together

Dr Karl Morten - mitochondrial research and ME/CFS at Oxford:

http://www.meassociation.org.uk/201...ondrial-muscle-research-in-mecfs-17-may-2016/

 

[Cinders66]

It would be fine for ME charities to be on the inside if the gains over the 9 years of being so were acceptable (they aren't); the charities from the start had stood up for acceptable funding levels, the severe & ME vs fatigue (they haven't really); and they weren't having to sit alongside Crawley in allegiance or defend to the hilt (as they do) the MRC .

An outside voice denouncing the crumbs for fatigue approach of the uk establish, would have been more effective I think and it's just painfully obvious that whilst the likes of the OMF can fund a half million dollar metabolomic follow up study the MEA won't be able to go for more than fifty thousand BECAUSE the MRC won't fund it and the public won't dream of giving money to our cause, unlike the millions they give rich MS societies, because of the uk CBT fatigue narrative from your fellow CMRC colleagues. THATS the problem you're trying to find a solution with those creating problems. That's why it's snail pace progress. I'm being asked to give up some of my benefits money to fund our U.K. research whilst CMRCs Cralwey and the SMC have scot free ran around telling uk public that CBT psychological treatment cures ME crippling our fundraising potential.

It's unfortunate criticsing MEA approach as it's a small charity, can't be done in a way which doesn't seem like ganging up on Dr shepherds who clearly gets irritated by not being suporteted in all his efforts but he has his view and apaproach, we have ours and I'm guessing most of us on here are quite needy so we have to just express what we feel would best help us, especially those of us running out of time and thinking change of direction is needed.

 

[trishrhymes]

Thank you @charles shepherd for this quick response and for the link to the other research MEA is funding/supporting.

@Cinders66 I agree it's grossly unfair that Crawley and co can get £1 million to fund dreadful CBT 'research' while we have to scrape around among ourselves for £50 thousand for good biomedical research. It's very painful for all of us to see this happening.

One of the inevitable problems of making an appeal to a group of vulnerable people is that some who can't afford to give anything without increasing hardship such as those relying solely on benefits feel pressure to give. I'm sure that's not what's intended. Those of us lucky enough to have some savings we can spare or have family members and friends who are able to give will do so. You should feel no pressure to give.

 

[Artstu]

I've made a donation from my meagre income, I must have been in a really good mood yesterday.

As Trish says it too really saddens me that we're having to scrape some funds together for meaningful research whilst millions are being wasted by Crawley and Co.

 

[Jo Best]

I'm delighted to hear that the London Biobank samples are to be put to good use.
What I'm less clear about is why MEA is choosing to crowdfund this project when it has the funds available, unless they've been spent during 2016 as the latest accounts are at the year end 2015 I think.
Charity Overview -
http://apps.charitycommission.gov.u...steredCharityNumber=801279&SubsidiaryNumber=0
THE MYALGIC ENCEPHALOPATHY ASSOCIATION LIMITED -
http://apps.charitycommission.gov.uk/Accounts/Ends79/0000801279_AC_20151231_E_C.pdf

 

[char47]

Thanks - it's clearly a very thankless task sitting on the Board of the CMRC as far as most ME/CFS internet discussion groups are concerned

So it's great to just occasionally find that someone appreciates the reason why I have always been keen to join committees and groups to put forward the patient point of view to people I do not always agree with

Put very simply, I do not believe it is sensible for charities who represent people with ME/CFS to say that they will not join a group or committee at the DWP, MRC, DoH, NICE etc when the organisation has enormous influece when it comes to making crucial decisions about people with ME/CFS

Because complaining/moaning/shouting from outside the tent usually has little or no effect whatsoever

So I won't be resigning from the Board of the CMRC...…..

And I will continue to support the AIMS of the MEGA study because I believe that Stephen Holgate has brought together a group of world class -omic experts who are new to ME/CFS research.

And if we can get the protocol right, especially in relation to patient selection, then this research (which is NOT psychiatric research as is being portrayed by some people) could provide some really useful information on sub-grouping that would help to separate people under the very unsatisfactory NICE 'on size fits all' treatment model of ME/CFS

If we can get the protocol and planning group right for MEGA then the MEA will endorse the research grant application when it is made in 2017

If not, we will not endorse it

Charles its not 'occasional' that you're supported in this, although it may feel that way to you. You always seem to miss my posts here & on MEAfb too, but i've said repeatedly since the beginning that i am incredibly grateful that you're taking this position.
I just dread to think what would happen if there were NO voice there from anyone who actually 'gets it', if everyone on the CMRC board were BPS fanclub.... God forbid! They would have unfettered opportunity to pollute the minds of every new scientist who came along. I mean i know yr influence is sadly limited, but I dread to think what they would be like without it.... yeesh we think it's bad now!

ETA apologies for seeming to bring this topic back to the CMRC, i replied before reading on

 

[Deepwater]

I am happy that the MEA stays represented on the CMRC. I think it is worth being on the inside with even a small chance of influence. This is likely the only way that the medical researchers will hear our point of view. It is Charles Shepherd who is giving up his time to speak on our behalf. He has enough clout that unbiased medical people involved will listen to him and some chance of counterbalancing the bias that is clearly there already. There are plenty of people shouting from the outside. Just because he will sit down and speak in this organisation does not make him our enemy. He remains our friend.

I absolutely agree that MEA should continue to have representation on the CMRC, and it needs to remain polite, but it also has to be very robust because the false model of the illness is entrenched and powerfully supported.
I'm not sure anyone has represented MEGA as a psychiatric study, but the inclusion of Esther Crawley, the proposed use of vague criteria and exclusion of patients too ill to be attending clinics (if I have these facts right) appear designed to water down the findings and enable the BPS psychiatrists to hang on to as large a subset of patients as possible. These suspicions have been confirmed for me by some of Esther Crawley's remarks in her recent media blitz.

 

[char47]

The simple answer is that the Oxford study is going to have some similarities and some differences to the Naviaux study - partly because Dr Karl Morten is involved in mitochondrial research, and he is now being funded by the MEA RRF to do mitochondrial (muscle) research in relation to ME/CFS

It would obviously be helpful to have some more details on what Dr Karl Morten and his colleagues will be doing in the form of a public information statement

I will ask Karl if he could put something together

Dr Karl Morten - mitochondrial research and ME/CFS at Oxford:

http://www.meassociation.org.uk/201...ondrial-muscle-research-in-mecfs-17-may-2016/

That would be great if he would do that

 

[charles shepherd]

I'm delighted to hear that the London Biobank samples are to be put to good use.
What I'm less clear about is why MEA is choosing to crowdfund this project when it has the funds available, unless they've been spent during 2016 as the latest accounts are at the year end 2015 I think.
Charity Overview -
http://apps.charitycommission.gov.u...steredCharityNumber=801279&SubsidiaryNumber=0
THE MYALGIC ENCEPHALOPATHY ASSOCIATION LIMITED -
http://apps.charitycommission.gov.uk/Accounts/Ends79/0000801279_AC_20151231_E_C.pdf

Jo - As you probably know, the MEA takes a very careful and prudent approach to managing its ring fenced research income and expenditure.

ALL of this Ramsay Research Fund income goes to research related activity because ALL of the head office administrative costs come out of general funds - so there are no extra salaries to pay.

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:

1 We are now the sole funder of the ME Biobank at the Royal Free Hospital - which is costing the RRF over £40,000 per annum

2 We have been funding/are still funding a number of important research studies - as listed on the Research section of the MEA website

3 We are currently assessing a number of new research grant and clinical trial applications/proposals - in fact, I will be dealing with the peer review of a new application costing £40,000 this afternoon

4 We have allocated at least £60,000 to help fund a clinical trial of Rituximab - when/if a research grant application is received. This has not been the case so far but if the results of the phase 3 clinical trial in Noway are positive then it may well be that we can help to set up a large multicentre phase 3 clinical trial here in the UK, and I know from previous discussions that this would have support from the CMRC

5 We are considering an application to start help funding a post-graduate student researcher and this new role may be extended

6 We are also going to use RRF funds to top up any shortfall from the Xmas appeal to make sure the UK metabolic research study goes ahead in 2017 without any delay

MEA website information on the Ramsay Research Fund: http://www.meassociation.org.uk/research2015/

I hope this helps to explain our position

CS

 

[charles shepherd]

Charles its not 'occasional' that you're supported in this, although it may feel that way to you. You always seem to miss my posts here & on MEAfb too, but i've said repeatedly since the beginning that i am incredibly grateful that you're taking this position.
I just dread to think what would happen if there were NO voice there from anyone who actually 'gets it', if everyone on the CMRC board were BPS fanclub.... God forbid! They would have unfettered opportunity to pollute the minds of every new scientist who came along. I mean i know yr influence is sadly limited, but I dread to think what they would be like without it.... yeesh we think it's bad now!

ETA apologies for seeming to bring this topic back to the CMRC, i replied before reading on

Thanks

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 is not correct and if it was I would not have joined the Board of the CMRC

 

[slysaint]

Here's a website question on the CMRC:

• 
  Should ME/CFS charities that fund/support research be joining the UK Research Collaborative?
  • Yes – definitely (39%, 241 Votes)
    
    
  • Yes – with caution (31%, 190 Votes)
    
    
  • Not sure (9%, 54 Votes)
    
    
  • No opinion (1%, 7 Votes)
    
    
  • Probably not (5%, 29 Votes)
    
    
  • Definitely not (15%, 101 Votes)
    
    
    Total Voters: 622

I'm not a statistician but 190 ( yes - with caution) plus the 29 'probably not' and the 101 'definitely not' shows that although 241 said 'yes definitely', 320 (over 50%) had reservations.

 

[Barry53]

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

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.