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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.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.
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.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.
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.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.
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?When MEA members disagree with something we are doing, or proposing to do, they soon let us know.
And those researchers are getting sucked into pseudo-scientific quackery like Crawley's intended direction to take the MEGA project.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.
When MEA members disagree with something we are doing, or proposing to do, they soon let us know.
Hi @charles shepherdOnce 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
I will now head for the nearest bunker!
Can we have a map please showing where the tent, the fence and the bunker are respectively so I can keep track?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!
Ha! I wish I could like this more than onceCan 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.
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.
And while you're at it can you also include
Canoodling is best performed in tents anyhowI'm dismayed you left out 'canoodling'
Draws handbag up to chin...sorry there isn't an emoji for that oneCan 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.
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