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Trying to work on the wording of a possible petition doesn't prevent other attempts to get more information about the study and why White and Crawley are involved.
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I personally think an anti-petition would be an own goal. I am dubious about the motives involved in the original petition but an anti-petition would seem to me simply acknowledge the existence of the original and put potential funders' backs up. I think there would be much better ways of making it clear that patients would like to know more about the study before signing up to it.
Yes that's an idea but a petition is usually presented as a show of support in terms of no. of people signing.An alternative would be to vote for the MEGA petition and use the comment to register concerns.
Excellent idea. Now that 3-4 good comments have been made, anyone can join change.org with just an email address, then upclick the good comments without signing the petition. If we can get those comments to the top it will send our message without adding to the signature total. I've just done it!An alternative would be to vote for the MEGA petition and use the comment to register concerns. I just had a look at the comment section and have seen a few people who have done that.
Comments can also be upvoted/liked and are by default sorted to show the top rated first. Critical comments I have seen have not been upvoted/liked yet.
I am signing on the understanding that no one Invovled with the PACE trials are involved.
I now wish to withdraw my support after reading Peter White's comments in the Guardian.
There is no doubt that research is lacking but to back the same horse and follow the same strategy that gave us PACE and MAGENTA is woeful. No mention of the entry/diagnostic criteria, no mention of objective bio-markers. An expensive study to result in yet another PACE debacle. ME flares in response to exertion and there are physiological changes etc....its not random flares. In calling for research it needs to be based on the CCC and or ICC criteria if in fact ME is to be studied. Objective measures are required not yet another "survey" based fatigue study. Invest in ME has ground breaking research as do the USA and Australia. Meanwhile in the UK????
Excellent idea. Now that 3-4 good comments have been made, anyone can join change.org with just an email address, then upclick the good comments without signing the petition. If we can get those comments to the top it will send our message without adding to the signature total. I've just done it!
https://www.change.org/p/support-th...ts-application-to-major-uk-research-funders/c
Here are some of the comments you might like to bump up:
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Think this is an excellent idea as anyone (not just UK) can do it.Would it be an idea to start a separate thread so that everyone sees this?
Would it be an idea to start a separate thread so that everyone sees this?
Done.Think this is an excellent idea as anyone (not just UK) can do it.
Can someone create the thread and post the 'instructions' as above?
could you change the title to say ' how everyone, not just UK ' can helpDone.
Thanks, donecould you change the title to say ' how everyone, not just UK ' can help
I am also concerned that trying to study 12000 ME patients for a total of, say, £3 million only allows about £250 per patient. This could easily be eaten up just by costs of recruitment, sample collection, data analysis, admin, investigators salaries etc. leaving less than nothing to actually carry out any biological tests.
Given that I understand the Naviaux study costs over $1000 per patient just to do the testing, and the in depth Open Medicine Foundation study of seriously affected patients is costing $20,000 per patient, I can't see how anything meaningful can be discovered.
I therefore wonder whether a tiny range of cheap tests will be done, find nothing and be used to support the psycho-social model.
Also, given that it took about 5 years to recruit 600 patients for the PACE trial, how on earth do they expect to find 12000 in any reasonable length of time? Or is that the plan - make the study so big it eats up all the research funding and effort in this country for the next 20 years?
We need an awful lot more answers before we can support this study.
I wonder whether the petition might somehow raise these issues? Or does that make it too complicated?
I agree that the involvement of the wrong people is the key issue.
So I want to see Dr Shepherds comments first and, probably being overoptimistic, I want to see if we get some kind of comment from AfME. I don't know when the next CMRC meeting is, though I suspect it won't be for some time, I have asked for this information though.Charles Shepherd said:If you want your correspondence to be seen by members of the CMRC Board and placed on the Agenda for the next CMRC meeting I suggest you send it to Sonya Chowdhury (at AfME) who deals with the Agenda items. I will be making some personal comments on the MEGA study tomorrow (Monday).