trishrhymes
Senior Member
- Messages
- 2,158
Hi all, I think perhaps there is so much confusion about what a counter petition should say, and what benefit or damage it might do that it might be best to abandon the idea and simply discourage people from signing the original petition if we don't like it.
I take Sasha's point that we are floundering a bit and in danger of making suggestions that make us a bit of a laughing stock to scientists. By getting caught up in the flaws of the PACE trial, and trying to ensure they are not repeated, we are in danger of saying things like 'no outcome switching' which are irrelevant to a trial that is exploring biomedical aspects of a disease, not testing a treatment on patients.
Perhaps we should concentrate on communicating in whatever way we can to the scientists involved (I mean the real scientists, not the biopsychosocial crowd) in the proposed study that it is vitally important that they divorce themselves from White, Wessley, Crawley etc. and use an internationally agreed definition for ME. It does worry me that that lot are being treated as experts on ME.
I would also want to encourage the scientist to communicate with some of the good American metabolomic, genomic etc researchers so they can co-ordinate research.
It would be a pity to put off scientists interested in carrying out a biomedical study of ME by being too critical. We need to find a way of making it clear that we want their sort of research, we just don't want the wrong people involved.
I take Sasha's point that we are floundering a bit and in danger of making suggestions that make us a bit of a laughing stock to scientists. By getting caught up in the flaws of the PACE trial, and trying to ensure they are not repeated, we are in danger of saying things like 'no outcome switching' which are irrelevant to a trial that is exploring biomedical aspects of a disease, not testing a treatment on patients.
Perhaps we should concentrate on communicating in whatever way we can to the scientists involved (I mean the real scientists, not the biopsychosocial crowd) in the proposed study that it is vitally important that they divorce themselves from White, Wessley, Crawley etc. and use an internationally agreed definition for ME. It does worry me that that lot are being treated as experts on ME.
I would also want to encourage the scientist to communicate with some of the good American metabolomic, genomic etc researchers so they can co-ordinate research.
It would be a pity to put off scientists interested in carrying out a biomedical study of ME by being too critical. We need to find a way of making it clear that we want their sort of research, we just don't want the wrong people involved.