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There are many new patients (or old patients) who stumble upon forums as they are trying to find information about ME so it is important that forums are public. Membership is not really controlled apart from filtering out people wanting to spam or sell stuff so members only doesn't really mean...

Or Nigel Hawkes who has done a hatchet job for the BMJ.

GPs clearly think this but rather than challenging those thoughts the systems are reinforcing them with things like the incentive payments and also the MUS story where GPs are encouraged to ignore symptoms and send people for CBT. Its another reason to worry about the whole MUS agenda in that I...

I think the incentives for GPs encourage this problem in that they get bonuses for not prescribing drugs or referring patients.

I think some of this may well be an issue of people doing stats on low quality data without realizing it because they never assess the data quality. For example, one quality check would be to take people with a cancer diagnosis and track back through records to see if the GP visits increased in...

It is. I remember when someone complained about the ethical approval given to one of Crawley's trials one of the things she quotes in terms of harm is the cochrane meta analysis for GET. But the quote she gives is misleading because it doesn't contain the caveat around very little data being...

It can take many appointments with the GP before they acknowledge a problem think about thinking about what it may be. I assume they discount the earlier visits when they dismiss patients out of hand as not directly related to medical conditions.

Non members can't access attachments (uploaded files) on occasions I have uploaded them to the webserver so that they can be accessible - which is what I did with the PACE briefing.

To me the creation and dissemination of this toolkit points to serious problems in the way AfME is run. Was it reviewed? If so why didn't reviewers pick up on the issues - were they chosen to be sympathetic? The basic question is does AfME have an adequate process for the production of such...

I think he is basically saying that and also playing to the stereotype that patients when they are patients loose all knowledge and ability to reason. Hence any analysis from patients is immediately discounted. There is also a huge arrogance in that some seem to think that science should be a...

Also the Bateman Horne centre have some interesting stuff. A number of youtube videos around patient education: http://batemanhornecenter.org/2018-online-patient-classes/ Also they have run a clinicians summit last march and Lucinda Bateman summarised here on a youtube video:

EPSRC tried a 'sandpit' process to do this and had some success I think what they did was identify areas they thought were critical (things like cyber security and privacy) then pulled together good researchers, some industry people to get a conversation going and consortium to apply for funding...

I think a committee could ask a different question which is around whether the design of the funding system achieves the desired outcomes for the country. And if not is there a way to improve it. With ME we have a few points. Firstly they funded poor quality research (PACE with a bad protocol)...

He has blocked me now. I wasn't impressed by the quality of his reasoning. His main argument seemed to be that what if PACE is right by criticising it we are blocking a treatment with a chance. But he failed to consider the costs of having ineffective treatments both on the likely development of...

Or reputational damage by showing he is prepared to defend friends without actually reading the thing he is defending.

I'm not sure where the first tweet came from but I suspect he was put up to defending PACE. Its strange how otherwise respectable academics occasionally appear out of nowhere to embarrass themselves by defending PACE.

This is the computer science dept and the HCI (Human Computer Interaction) are a good group although the person I know isn't involved in this paper.

I wonder what all trials would say about the tricks that Crawley plays if they were presented to them as a blind review (i.e. take out who was doing the work and what disease was being investigated).

I suspect this is really significant. I would be very surprised if Wessely and friends hadn't tried to lobby some MPs to support their work and found no one. I also think that it is worth remembering that this change in attitude was also a result of work done by patients (many here) to expose...

Also lets not forget the state guardian for children thing in Scotland which could have a really bad impact on children and be used as a mechanism for forced treatment.