Petition: That the ME Association leave the CMRC

Valentijn

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The CMRC organises an annual two day research conference to bring in new researchers and has carried out a number of other research initiatives - all of which will carry on if the MEA left the Board.
This conference supports a fair bit of quackery. Why not get the serious researchers involved in other conferences instead? Surely the MEA can contribute to that without being part of the CMRC.

Finally, for the benefit of people on PR who are not members of the MEA, we have regularly asked our members for their views on both the charity's membership of the CMRC and our position on the MEGA research study through our MEA Facebook Page and through ME Essential, our quarterly magazine - ME Essential.
When was the last time they were asked? Crawley's behavior has gotten quite a bit worse recently, and Holgate's support of her and other bad scientific practices have occurred somewhat recently as well.

To date the feedback on both of these topics has been minimal - which suggests that our members are satisfied with the way in which we are dealing with both of these controversial topics.
Or they don't understand the situation, which is especially likely to occur if your coverage of such topics doesn't include what Crawley says about sick children, advocates, and patients in general.

When MEA members disagree with something we are doing, or proposing to do, they soon let us know.
As several have done, without it having any impact in the slightest. I wouldn't encourage anyone to express their displeasure over the CMRC by leaving the MEA (though certainly understand and support those who do) - but how many have to leave before the MEA cares enough to even poll its members?

They have succeeded in bringing in a considerable number of researchers from a variety of biomedical -ologies who are new to the subject of ME/CFS research. My report on the CMRC conference in Newcastle will confirm that the content of the CMRC conference is biomedical research and not psychological research.
And those researchers are getting sucked into pseudo-scientific quackery like Crawley's intended direction to take the MEGA project.

Thank you for giving us a list of what you think the CMRC has accomplished. But I must agree with others that you've given it undue credit in many regards, and I don't agree with counting attempts to do something as being an accomplishment. The work that the MEA does outside of the CMRC is far more impressive and helpful to patients.
 
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Once again - I'm not going to spend a lot of my time today debating how the MEA consults with its members on a discussion forum where the vast majority of people are not members of the charity

What I will say is that the MEA has a robust and well established procedure for contacting and consulting with MEA members on issues of topical interest and concern - such as MEGA and the NICE guideline review

MEA members are regularly asked for their opnions via our extremely active social media forums - MEA Facebook and the MEA website in particular - along with direct emails at regular itervals to MEA members who indicate that they want to receive them

Feedback that is then passed to the MEA office where it is recorded and noted and, in particular, anything that is critical of MEA policy that has been placed on either the MEA website or MEA Facebook, or sent by email to the office, is brought to the attention of trustees and (where necessary) replied to - often by our Chairman

The other main way we consult with MEA members is through ME Essential magazine - because a significant proportion of our members do not follow social media discussion forums or do not have a computer. Members are asked in the magazine to contact the MEA if they want to comment on any topical issue that is being covered - and they do

On major issues of policy - eg the decision to use the term encephalopathy in our title - we have carried out a postal vote of members and we abide by their decision

All MEA trustees are elected and have to be re-elected at regular intervals. So MEA members can remove a trustee, including myself and our Chaiman, if they do not like the way we are running the charity

We have a complaints policy that is followed if any member feels that they are not being listened to - this is very rarely used

We also carry out a monthly MEA website survey where members and non members can express their view on topical issues - the current survey allows people to express a range of views on the NICE guideline review. We have also covered the CMRC

I m not aware of any other UK ME/CFS charity that goes to these lengths to both consult with their members and, at the same time, give them the opportunity to remove the governing body if they do not like what the chrity is doing

Dr Charles Shepherd
Hon Medical Adviser, MEA
 
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Once again - I'm not going to spend a lot of my time today debating how the MEA consults with its members on a discussion forum where the vast majority of people are not members of the charity

What I will say is that the MEA has a robust and well established procedure for contacting and consulting with MEA members on issues of topical interest and concern - such as MEGA and the NICE guideline review

MEA members are regularly asked for their opnions via our extremely active social media forums - MEA Facebook and the MEA website in particular - along with direct emails at regular itervals to MEA members who indicate that they want to receive them

Feedback that is then passed to the MEA office where it is recorded and noted and, in particular, anything that is critical of MEA policy that has been placed on either the MEA website or MEA Facebook, or sent by email to the office, is brought to the attention of trustees and (where necessary) replied to - often by our Chairman

The other main way we consult with MEA members is through ME Essential magazine - because a significant proportion of our members do not follow social media discussion forums or do not have a computer. Members are asked in the magazine to contact the MEA if they want to comment on any topical issue that is being covered - and they do

On major issues of policy - eg the decision to use the term encephalopathy in our title - we have carried out a postal vote of members and we abide by their decision

All MEA trustees are elected and have to be re-elected at regular intervals. So MEA members can remove a trustee, including myself and our Chaiman, if they do not like the way we are running the charity

We have a complaints policy that is followed if any member feels that they are not being listened to - this is very rarely used

We also carry out a monthly MEA website survey where members and non members can express their view on topical issues - the current survey allows people to express a range of views on the NICE guideline review. We have also covered the CMRC

I m not aware of any other UK ME/CFS charity that goes to these lengths to both consult with their members and, at the same time, give them the opportunity to remove the governing body if they do not like what the chrity is doing

Dr Charles Shepherd
Hon Medical Adviser, MEA
Hi @charles shepherd

I don't expect an immediate reply, but can you explain when was the last time you asked members of the MEA about the CMRC? I am a member and I may have missed this but I haven't seen any requests for opinion on this matter recently.
 

MEMum

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Hi @charles shepherd, I am amazed at the amount of time and energy you have already spent on this.
I am extremely grateful for all the hard work that you and many others put in behind the scenes as well as the information and answers to queries on here.
I think I may well join the MEA. I can see the arguments from both sides and have read most of the info on why people want MEA to leave the tent, so no need for repetition of comments.
If I thought that the MEA leaving the CMRC would get any publicity, questioning etc then it might be a good idea, but that is just not going to happen.
I will now head for the nearest bunker!
 
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He's spending a ridiculous amount of time on not answering questions. If he answered the questions directly and not like a politician this could have been over weeks ago. This is my whole point, it's a waste of time and energy Charles replying like this and also being a memeber of the CMRC. Resources need to be directed in a more productive way.
 

TiredSam

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No need for bunkers. As one of the people who sat on the fence for a while on this, I do understand both sides. I will not rehearse the arguments, just agree to differ now that I have fallen off the fence!
Can we have a map please showing where the tent, the fence and the bunker are respectively so I can keep track?

And while you're at it can you also include the hedge, the brick wall, the crossroads, the thorny path, the parting of the ways, the mountain, the molehill, the entrenched position, the impasse and the way ahead? Thanks.
 

Skycloud

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Can we have a map please showing where the tent, the fence and the bunker are respectively so I can keep track?

And while you're at it can you also include the hedge, the brick wall, the crossroads, the thorny path, the parting of the ways, the mountain, the molehill, the entrenched position, the impasse and the way ahead? Thanks.
Ha! :lol: I wish I could like this more than once
 

MEMum

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Can we have a map please showing where the tent, the fence and the bunker are respectively so I can keep track?

And while you're at it can you also include the hedge, the brick wall, the crossroads, the thorny path, the parting of the ways, the mountain, the molehill, the entrenched position, the impasse and the way ahead? Thanks.

Don't forget the mole. I feel it is useful to have a mole or two in the tent. No I am not saying that CS or Julia Newton are small, brown and furry with poor eyesight!
At least they are party to some of the discussions and can keep others informed.

I am sure there are some creative and resourceful people on here who will take up your challenge to produce a map.
 
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Can we have a map please showing where the tent, the fence and the bunker are respectively so I can keep track?

And while you're at it can you also include the hedge, the brick wall, the crossroads, the thorny path, the parting of the ways, the mountain, the molehill, the entrenched position, the impasse and the way ahead? Thanks.
Draws handbag up to chin...sorry there isn't an emoji for that one
 

Londinium

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So I actually am a member of the MEA and I support their position of engaging with the CMRC whilst retaining critical thinking. I don't plan to rehash my reasoning as others have done a good job above. The only point I want to make is this: I understand the complaint of those who are opposed to the CMRC that by the MEA engaging it implies the CMRC has widespread patient support; however, the converse also applies - pressuring the MEA to pull out would imply that all patients are opposed to all aspects of the CMRC, which some of us are not.

So, given the controversy and the fact there isn't one monolithic position, why not simply have those who are heavily opposed to CMRC engagement donate to and support other ME charities? Pressurising the MEA to take a different position would mean that those of us who do favour critical CMRC engagement would lose our voice.
 

Cinders66

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Previous response added to:

OK - it is very clear that some people on PR don't like the type of carefully thought through and constructive (rather than shouting) advocacy and campaigning that myself and the MEA am involved with - but someone has to do it

The MEA has been the only charity to organise a petition calling on NICE to overrule their experts on the ME/CFS guideline review - with nearly 9000 signatures being collected so far in just four days

I have just written to Board members on the CMRC today to let them know how strongly the MEA is opposing the decision to not update the guideline. From the PR petition thread:

I have now informed Board members on the CMRC that the MEA has created a petition calling on NICE to basically overrule the recommendation of their expert group that has been reviewing all the evidence (which appears to be reviewing abstracts rather than actual papers) and to move forward with a proper and comprehensive review of the NICE guideline on ME/CFS

I have also informed the CMRC that the MEA petition has gathered more than 8800 signatures in less than four days - so I do not think this demonstation of quite overwhelming patient dissatisfaction can be ignored by NICE

NB: The CMRC has NOT been involved with the NICE guideline review, nor the guideline development process, and is NOT a stakeholder in the consultation process. Neither is the MRC.

However, there are members of the CMRC Board who have input into various stakeholder groups - so I feel it is important for them to be aware of the position being taken by the MEA

Interesting to note some of the names on the NICE stakeholder list:

British Medical Journal
Cochrane centre for depresion, anxiety and neurosis
Eli Lilly (drug company)
Ministry of Defence
Royal College of Psychiatrists

Full list of ME/CFS stakeholders in the ME/CFS guideline here:
https://www.nice.org.uk/.../documents/stakeholder-list-2

Dr Charles Shepherd
Hon Medical Adviser, MEA

The MEA was also the only charity to organise a petition opposing the PACE trial when it was being organised

Whilst I welcome the NICE petition, The reply from dr Charles Shepherd highlights the two occasions over the past 10-15 years that the MEA Has mobilised the patient voice against what I see as fundamental neglect and mistreatment and oppression by the establishment and medical profession. I want national charities that regularly lobby and campaign rather than take the mainly boardroom collaborative approach when it seems that Is being used to keep us in the desired place and when progress is too slow. If we were a community where the worst affected might have to give up working full time I can accept a slow and steady respectable approach to an end goal where things are generally better but we are in a community where the worst affected are horrifically so and even the moderate can not work.

The NICE petition comments fully reveal the length of suffering and disquiet out there but there's been no leading of a patient movement for change on other issues, e.g. Severe ME and research Funding, I don't see that as shouty advocacy and there's no reason why a charity can't do both but in the situation we are in, yes I would prefer more direct hard hitting stuff more often, than accepting the establishment approach including collaboration on their terms, on their criteria, on their type of research. AFME are just hot air and basic support so we are not going to get anything action wise from them despite their name.

Let's hope this petition, the existence of #MEaction and David tillers involvement mean we can see more effective lobbying as created change in the USA. AFAIC the only way to lobby for more effective state leading of rapid progress making ME research within the uk would be to reject the big tent, broad (read weak criteria) , no ring-fencing, Crawley led offering to date.
 
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