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(UK) "Frenchay to lead 250,000 study into the effects of early intervention for ME"
- Thread starter Dolphin
- Start date
There was a previous study on the Frenchay program - O'Dowd et al, 2006 http://www.hta.ac.uk/execsumm/summ1037.htm . The report is over 100 pages.
The letter below summarises the results, which weren't very good.
The letter below summarises the results, which weren't very good.
Battery Muncher
Senior Member
- Messages
- 620
Jeez. The psychiatric lobby is absurdly powerful, how is it that 250k gets put into yet another psycho study, yet the funding for Rituximab replication trials are nowhere to be seen!?!
free at last
Senior Member
- Messages
- 697
The words Tiredness used, Forget sweating Nausea poisioned weak dizzy lightheaded on and on. Tiredness happens just before i go a kip. the others are a bit more than that. You know many of these reserachers need to live the life for a few years, and then see if tiredness creeps up as a major symptom term from them
Have you ever burst into tears because your too tired ? no didnt think so. Hopefully norway finds out more soon for those desperate for treatment. Funny how i still get tired a lot now, but dont suffer the other symptoms like i did for the first 5 years bad. Thats how much tiredeness should be used as a major symptom here. they really dont look at the worst cases do they. Just the boarderline ones, so it fits there model, that they want it to be. Why oh why are they always downplaying the worst affected paitients, and ignoring the really ill patients.
Have you ever burst into tears because your too tired ? no didnt think so. Hopefully norway finds out more soon for those desperate for treatment. Funny how i still get tired a lot now, but dont suffer the other symptoms like i did for the first 5 years bad. Thats how much tiredeness should be used as a major symptom here. they really dont look at the worst cases do they. Just the boarderline ones, so it fits there model, that they want it to be. Why oh why are they always downplaying the worst affected paitients, and ignoring the really ill patients.
taniaaust1
Senior Member
- Messages
- 13,054
- Location
- Sth Australia
What a waste of money
Maybe they should be researching why on earth it is taking up to FOUR YEARS for people to get diagnosed with something any decent ME specialist could probably diagnose before even the 6mths are up. Does that point to their doctors cant tell the difference between ME and other mental health issues and hence a delayed diagnoses? or are they trying to diagnose those who are hardly really sick???
Maybe they should be researching why on earth it is taking up to FOUR YEARS for people to get diagnosed with something any decent ME specialist could probably diagnose before even the 6mths are up. Does that point to their doctors cant tell the difference between ME and other mental health issues and hence a delayed diagnoses? or are they trying to diagnose those who are hardly really sick???
biophile
Places I'd rather be.
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- 8,977
When I first saw the title of this thread, my first assumption was that they were going to test the outcome of early diagnosis and treatment compared to the typical neglect and dismissal and delayed diagnosis we usually get, although doing so prospectively would be unethical. Instead it turns out to be just another typical CBT/GET trial using tired patients from general practice. Sounds like a slam dunk for them, they have a therapy which convinces patients to score better on subjective measures, the results can be spun despite the lack of objective evidence and issues with case definition.
Yes, perhaps they should research why it is taking so long to even get a diagnosis. I guess for me I was told "nothing was wrong" and that my symptoms were due to "growing pains". Since I was still a relatively "high functioning" teenager at the time, I was ignorant and didn't pursue the issue and just tried to adapt to a normal life which included being seduced by psychobabble and graded exercise, and later CAM out of desperation after a CFS diagnosis. The inevitable failure and declining capabilities and poor quality of life from such an approach were embarrassing incentives to see another doctor again and finally get a diagnosis of "CFS" after at least 6 years of limbo.
I don't blame the first doctor because the CFS construct was new at the time and he probably never heard of it, not to mention back in those days it wasn't supposed to occur in adolescents according to biopsychosocialists! I had some degree of all main symptom categories of CCC-ME/CFS, but I didn't have a major reduction of activity yet (although I struggled to be more than sedentary despite a keenness for exercise and grades were gradually declining) so I don't know if I would have received a CFS diagnosis anyway.
In hindsight the knowledge I have now about ME/CFS would have been invaluable even without treatment. Just knowing that something was indeed "wrong" would have prevented much confusion and self-doubt. Just knowing about the activity ceiling and pacing would have prevented post-exertional suffering and related declines in health. Just knowing that mind over body psychobabble was a useless ideology for CFS would have saved me further declines (although aspects of it was OK for mental health when there was enough energy).
Just knowing that the biopsychosocial approach to CFS is based more on flawed research and speculation than fact would have saved me a few years too. Exercising your way back to health is a dangerous delusion for many patients no matter how careful they are, and now we have to put up with seeing this delusion being perpetrated in medical journals under the guise of pragmatism. Just knowing that the ME/CFS definitions do tend to capture a consistent disease entity would have saved me from looking in the wrong places and wondering why my symptoms aren't described properly by CDC criteria and whether they were even related (after a CFS diagnosis it took me years to realise that it is more than just another way of saying "we don't know" or "it's fatigue in the same category as anxiety and depression").
The internet has been such a great resource for me. I could explore the literature for myself, albeit with limitations. I never heard of ME and reading the Canadian 2003 definition for ME/CFS was a major revelation, it was the first time I felt like anyone knew what they were talking about when it came to the symptoms I experienced. Today I started writing a sarcastic study proposal for the 250,000, about comparing a group of patients subject to the typical neglect and dismissal and delayed diagnosis vs patients receiving proper medical treatment, but I couldn't be bothered finishing it.
Yes, perhaps they should research why it is taking so long to even get a diagnosis. I guess for me I was told "nothing was wrong" and that my symptoms were due to "growing pains". Since I was still a relatively "high functioning" teenager at the time, I was ignorant and didn't pursue the issue and just tried to adapt to a normal life which included being seduced by psychobabble and graded exercise, and later CAM out of desperation after a CFS diagnosis. The inevitable failure and declining capabilities and poor quality of life from such an approach were embarrassing incentives to see another doctor again and finally get a diagnosis of "CFS" after at least 6 years of limbo.
I don't blame the first doctor because the CFS construct was new at the time and he probably never heard of it, not to mention back in those days it wasn't supposed to occur in adolescents according to biopsychosocialists! I had some degree of all main symptom categories of CCC-ME/CFS, but I didn't have a major reduction of activity yet (although I struggled to be more than sedentary despite a keenness for exercise and grades were gradually declining) so I don't know if I would have received a CFS diagnosis anyway.
In hindsight the knowledge I have now about ME/CFS would have been invaluable even without treatment. Just knowing that something was indeed "wrong" would have prevented much confusion and self-doubt. Just knowing about the activity ceiling and pacing would have prevented post-exertional suffering and related declines in health. Just knowing that mind over body psychobabble was a useless ideology for CFS would have saved me further declines (although aspects of it was OK for mental health when there was enough energy).
Just knowing that the biopsychosocial approach to CFS is based more on flawed research and speculation than fact would have saved me a few years too. Exercising your way back to health is a dangerous delusion for many patients no matter how careful they are, and now we have to put up with seeing this delusion being perpetrated in medical journals under the guise of pragmatism. Just knowing that the ME/CFS definitions do tend to capture a consistent disease entity would have saved me from looking in the wrong places and wondering why my symptoms aren't described properly by CDC criteria and whether they were even related (after a CFS diagnosis it took me years to realise that it is more than just another way of saying "we don't know" or "it's fatigue in the same category as anxiety and depression").
The internet has been such a great resource for me. I could explore the literature for myself, albeit with limitations. I never heard of ME and reading the Canadian 2003 definition for ME/CFS was a major revelation, it was the first time I felt like anyone knew what they were talking about when it came to the symptoms I experienced. Today I started writing a sarcastic study proposal for the 250,000, about comparing a group of patients subject to the typical neglect and dismissal and delayed diagnosis vs patients receiving proper medical treatment, but I couldn't be bothered finishing it.
SilverbladeTE
Senior Member
- Messages
- 3,043
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- Somewhere near Glasgow, Scotland
Psychiatrists are masters of Human manipulation, THAT is why they have such power and they are like modern day Inquisition:
"If you defy us, you must be mad! Destroy the heretic/madman for opposing us as we do God's Work/aid the poor so do not dare stop us!"
That profession should be destroyed, utterly, it has little to do with scientific-based medicine, has had much to do with gross criminal and unethical behaviour (see revelations in past 5 years regaridng pharma corp ties etc), and is part of the huge psy-ops/corporate world which makes the Soviets etc look like freakin' amateurs.
"If you defy us, you must be mad! Destroy the heretic/madman for opposing us as we do God's Work/aid the poor so do not dare stop us!"
That profession should be destroyed, utterly, it has little to do with scientific-based medicine, has had much to do with gross criminal and unethical behaviour (see revelations in past 5 years regaridng pharma corp ties etc), and is part of the huge psy-ops/corporate world which makes the Soviets etc look like freakin' amateurs.
Thanks biophile. It took me five years to get diagnosed (and I got ill as a teenager also and was mildly affected for the first few years). A diagnosis would have been useful. That's not the same as any "treatments"/therapies that are associated with it being necessarily beneficial.
After reading this I couldn't get the picture of some overly enthusiastic psychiatrist saying "By God we'll prove that GET And CBT are effective treatments especially when implemented early following it's onset. We'll prove it even if it kills you or incapacitates you whichever one comes first. At which point you will be ejected from the study on the basis of failing to continue with the treatment, being a difficult patient or both."
snowathlete
Senior Member
- Messages
- 5,374
- Location
- UK
Nonsense isnt it.
Typically of course, pyscologists and therapists that are employed by these ME centres, are cheap and thats why the government uses them. Its a way of pretending to do something for those ill with ME in the UK without actually doing anything real or useful.
The cost of doing something proper, i.e. treating the illness as a pysiological illness and looking at what they can do to treat it (or heaven forbid, asking us what we want them to do!) is far far greater than what they are doing. That is why these places exist, and of course its compatible with their years of neglect of our illness.
I suppose once these people get these jobs and get the centres running they look for ways of getting more funding and the because of the misinformation about ME and the slack requirements for convincing someone to give you some cash for this type of work, they find it fairly easy to get the funding.
Of course, the government can continue to say, "we are doing something" and "we are spending money on research" and the false view of ME in reinforced further.
Cant say i am surprised, but its very annoying. I live fairly close to Frenchay, if they had offered something of value then i could have benefited...
What a joke the UK is.
Typically of course, pyscologists and therapists that are employed by these ME centres, are cheap and thats why the government uses them. Its a way of pretending to do something for those ill with ME in the UK without actually doing anything real or useful.
The cost of doing something proper, i.e. treating the illness as a pysiological illness and looking at what they can do to treat it (or heaven forbid, asking us what we want them to do!) is far far greater than what they are doing. That is why these places exist, and of course its compatible with their years of neglect of our illness.
I suppose once these people get these jobs and get the centres running they look for ways of getting more funding and the because of the misinformation about ME and the slack requirements for convincing someone to give you some cash for this type of work, they find it fairly easy to get the funding.
Of course, the government can continue to say, "we are doing something" and "we are spending money on research" and the false view of ME in reinforced further.
Cant say i am surprised, but its very annoying. I live fairly close to Frenchay, if they had offered something of value then i could have benefited...
What a joke the UK is.
Yes.
Instead of:
perhaps it should be called:
- a way for them to try to justify their job.
biophile
Places I'd rather be.
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Good to know that others had similar experiences of starting out as mild cases and then worsening substantially. Yeah, I'm not sure either if having an earlier diagnosis would have helped treatment, but it hopefully would have prevented management mistakes. How do you think such cases can be diagnosed in time before becoming worse, without either relying on major reductions of activity or making the criteria too broad?
Taking a guess from my own anecdotal experience vs a few other people I knew who had chronic fatigue plus a few other symptoms but never progressed or declined into full blown long term ME/CFS, the difference was not huge differences in initial functional impairments but a tendency for them to not experience the full range of CCC-ME/CFS symptoms in the first place. Another difference was that I never experienced any benefits from exercise. Aerobic exercise seemed to be the worst. I was still able to maintain a sedentary lifestyle and attempt exercise (with negative consequences), but there was a significant reduction of expected capacity beyond sedentariness.
Someone was telling me there was a documentary on TV about experiments 50 years ago that involved reforming prisoners by beating them senseless and subjecting them to tortuous manual labor and stress positions. Turned out these prisoners ended up having a much higher rate of becoming violent offenders upon release. My first response was, "you can almost guarantee there was some psychologist or psychiatrist actively involved in developing that approach, not just being there to monitor the situation". And to borrow a theme from dark humoured friends and movies, there is also a good chance said psychologist or psychiatrist was, on some level, aroused.
Yes, same with me.
I like differentiating between research and clinical criteria, with research criteria being stricter. I don't think anyone has a "right" to be in research - if I had been diagnosed when mild, I wouldn't have minded if I wasn't in research studies. At the same time, it's a serious condition so things should be done to spot people to prevent them becoming more severely affected. So spotting people is important.
I don't have a major answer to your question.
I don't think I had the full range of symptoms when mild e.g. no bladder frequency. I generally didn't have problems with my bowel - (a bit gross) - it maybe became a little looser for the odd stressful event - but many in the population have that sort of level. I don't recall many sore throats for the first four years. I was perhaps unusual as I could be quite sedentary (full time student, no children or other responsibilities) and was generally able to avoid strenuous activities. I seemed to strain muscles when I did so generally I avoid strenuous activities except when doing specific exercise sessions. So I didn't provoke my symptoms which might have been why I wouldn't notice lots of symptoms.
But as an improvement on the current approaches, I think the revised CCC is good:
sianrecovery
Senior Member
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- Manchester UK
Another quarter of a mill down the toilet, at the same time as people trying to do geniunely useful research in ME in the UK are blocked by Wessely et al at every turn. I wish I had the energy or money to emigrate
Same here. I don't think an earlier diagnosis would have altered the basic underlying problems, but I am pretty confident that it would have reduced the broader impact considerably.
And that is a quarter of a million POUNDS! (currently equals about 390 000 Australian or US dollars).