Discussion in 'General ME/CFS News' started by Firestormm, Sep 16, 2013.
I find it hard to see how they could really get any results from trawling through GP records as there will be no quality control on treatment, compliance or outcomes. I can see how it works with drugs where there is a simple question around prescribed dose and was it taken but I don't see how it follows for anything else.
I'm not impressed by work they have done thus far on the National Outcomes Data. Given the issues with data and quality control they need to use more robust stats methods than simply quoting the mean.
Yet Dr Crawley promises her patients 97% recovery rates even though little in known. I've certainly go the impression she doesn't believe in severe ME.
No money for Rituximab etc, but £864,000 for another bloody subjective GET study?
This is truly sick. More much needed funds wasted on more "garbage-in = garbage-out" .
No attempt at a placebo control group? Win-win for Crawley, and those making money from cfs, lose-lose for patients.
Better than the Lightning Process? So close that it's within the normal fluctuations of quackery we expect from Crawley?
Stuff like this is one of the reasons I feel bad about pushing for more CFS research funding. Better to let patients with other conditions have more worthwhile research than waste money on Crawley.
Action for ME statement:
I think that Sonya Chowdhury is genuinely foolish enough to believe this. She seems utterly uninterested in critically assessing anything. If the amount being spent goes up, that must be a good thing! What an achievement Sonya - you must be so proud. I wonder if she'd be capable of citing one example of poorly done CFS research that served to make life worse for patients. I fear that she may not even realise such a thing is possible.
Why is Stephen Holgate quoted? Please tell me that this isn't the first outcome of the UK CFS/ME Research Collaborative, and it's just an unfortunate use of PR by Bristol?
It doesn't look like it, does it. They're just looking at 'recovery' outcomes in the NHS, and will then ascribe the 'recovery' to either GET or activity management, depending which therapy the 'recovered' patient received.
This whole thing feels like a massive slap in the face for patients, and an appalling use of public funds.
As far as I can make out, it's £1.2M going down the drain, not just £864,000.
How do they manage to spend so much on silly little questionaires?
It's not like lab work, with expensive chemicals and equipment and highly qualified technicians...
where the money ought to be going.
CMRC are not a funding body of course, and no this is not a first effort from them; and yes it is - in respect of your latter point Bob
No, but they are pooling resources to attract funding.
Good. Thank you. That's a relief!
Why in this day and age do we, the patients suffering from this illness, get no actual day on where huge sums of research money are spent?
I can't imagine there are many of us in the UK who want money wasted on this when it could go to infinitely better use. So frustrating!
Only a couple of comments on their FB item on this, both negative. Scope for putting some more on there.
I think there's always room for well-argued points in this sort of thing. Personally I think it comes across better if you write as though you assume that the person on the other end has acted in good faith (I don't know anything about Sonya Chowdhury).
It's worth bearing in mind that AfME seem to have a ton of supporters - that's a lot of our fellow patients who could do with knowing what the issues are.
The MRC actually had two rounds of consultations in 2002 when drawing up a research strategy. As I recall, the first round was very restrictive - can't remember the details. Still no evidence that people asked for what was in the draft research strategy. Anyway, lots of people slated the draft research strategy, saying what was needed was more aetiological and pathophysiological research (the draft strategy said these weren't necessary/something all those lines), but all they basically did was use less offensive language in the final strategy. A couple of weeks after the strategy came out, the FINE and PACE Trials came out. It looks to me it was likely pressure came from somewhere to ensure that the research strategy justified supporting the FINE and PACE trials.
The panel itself was somewhat biased: they claimed it would be fresh and independent but actually contained three people, if I recall correctly, who had done some research with the biopsychosocial brigade (two on CFS and one on GWS). Some groups objected to the panel but some others didn't want to rock the boat; also some people had difficulty believing there was going to be bias, it seemed: some people seem to have an (in my mind, unhealthy) trust of establishment/authorities of one sort or another. It was a frustrating time trying to debate with some people.
Well, I am not from UK but this is really ridiculous. It took more than 1 year to fund from the patients pocket that IiME gut study with the budget of 100 000 pounds. There is no more excuse for those incompetent people.
Although I think it's partly inevitable when one has rehab services for ME/CFS esp. ones that are part of the national health service. They're a big part of the problem I think.
Holgate says that we need more biological research looking at different molecular causal pathways yet here we have large amounts of research funds being allocated to yet more of the same psychosocial research. From the press release these sound like activities to fill researchers time and get research funds to further their careers rather than any attempt to understand a disease.
We basically have Crawley carrying out an "exercise" study on children with mild and moderate ME but talking up the advice this will give to severe patients in her press release. Given the PACE trials poor results this seems unjustifiable. It would be interesting to see if Crawley repeated her 30-40% recovered error in her research proposal. The protocol will be interesting - will it let her dismiss patients who get worse as having pervasive refusal syndrome and hence up the 'recovery rates'.
The other bit of funding is digging through health records. Without a decent diagnostic system consistently applied by GPs it is hard to see how examining such health records would lead to any results.
Neither will help gain an understanding of potential causal paths let alone help test any hypothesis yet both eat a significant amount of research money. At the same time patients are raising money for a Rituximab trial which will help test a causal pathway and Lipkin is appealing for fund for his work.
It's really ironic how both the go ernments of the US and UK take our tax money's and use it as a weapon against us!
Cue the typical response: "patients demand more funding but complain when it is spent on projects they do not like".
Why should patients be happy when rare funds are poorly allocated. I guess the collaboration think that GET is a promising lead, but as user9876 said it is just a rehash and will tell us nothing about molecular causal pathways, while UK patients have to slowly scrape together funding for promising leads and even Lipkin's projects in USA cannot get enough funding.
snowathlete's avatar, mysterious cities of gold!!! We could certainly use some of that for research funding.
The annoying part about these grants is none of these studies are innovative, they are not being conducted in such a way that will give us new information.
I have no problems with funding these sorts of studies, but they must be funded in addition to other worthwhile studies investigating the biological side and secondly, they must be conducted to the highest standard. Specifically, studies of non-pharmacological interventions that do not use objective measures of functioning at the followup intervals (specifically actometers) are of low quality and should not be funded.
We don't really know the specifics of the Collin one. I'm concerned it will be a fishing expedition though. Given the researchers involved, I have little faith in the work being sensibly done or presented, even if there was the potential for new information to be collected.
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