Discussion in 'Latest ME/CFS Research' started by Wildcat, Apr 10, 2012.
Who is financing this study?
Why do they bother doing the same trials without testing anything new. This study could be break new ground if they made a few basic modifications - eg use actometers to see if GET is associated with activity increases vs activity substitution.
Could complaints of how bad this study is going to be, be directed to whoever is funding it?? Could we get whoever funds it.. make the ones doing study use actometers? (did I use wrong word earlier?), to help assess improvement instead of subjective thoughts.
I dont think we'd be able to get the study stopped but maybe we can make them to be forced into doing the study better.
Why has psychriatry got so much money to waste to be able to do what is almost repeat studies over and over? If these studies need to go ahead.. well can we make them be forced to make the studies better and possibly prove that these therapies dont work well at all.
These studies if they were all set up right, could actually be to our advantage to show what isnt working good.
One thing I would query from my own experience is any limited (timewise) study of patients. In early days it seemed a good idea (and by my GP) to have a course with an Osteopath - indeed things did seem to improve, muscles eased and capacities to walk crept up. After about 8 weeks I had an enormous crash - very unwell and back to bed in a worse situation than before. My Osteopath declined further treatment all too aware she did not understand the whole illness. Peter White et al should admit their ignorance in the matter too.
I think it's pretty well documented relapses can occur over a period of time usually linked to overactivity. Contrary to CBTists it's trying too hard and even worse symptoms follow.......to passing out 3 times ...... now how would that rate on their scales. Are these people thick.
Mr White needs a taste of his own medicine
From Roy on MECFS Forums:
Prof White's Six Steps:
1. You put your right foot in.
2. You put your right foot out.
3. You put your right foot in.
4. And you shake it all about.
5. You do the Hokey-Pokey.
6. And you turn yourself around.
That's what it's all about!
Hehe SilverbladeTE. This is how CFS patients should look after 12 months of GET if the deconditioning hypothesis was accurate:
I would like to see White et al follow the GET protocol for 12 months. Accordingly, since there is no pathology there shouldn't be any reason why they can't increase their activity about 10-20% every 1-2 weeks. After 12 months they should be able to work 100 hours per week and jog 20 miles on the beach every day, unless of course they are stuck in a vicious cycle of fear-avoidance / belief that activity is harmful, deconditioning, symptom hypervigilance, somatic attributions, poor motivation, depression, stress, secondary gain ("playing the sick role"), etc.
'The relatively objective'...?
'The more objective'...?
Any such results would have been pushed out front and centre. They are very conspicuous in their absence.
That was the best result from the 'objective' measures. Says it all.
This point needs to be repeated loudly until the relevant ears bleed.
The six minute walking test has been discredited on basic science, at least for ME, since about 2006, and every year the case against such simplistic tests keeps mounting. The exercise physiology findings do that. While in nearly all cases any exercise test is repeatable, it is an established finding that tests with us are not repeatable. That lack of repeatability due to a physiologically proven crash in the aerobic capacity is very strong evidence that the six minute walking test is a very bad measure to use for ME. An actometer at least measures our capacity over time. Bye, Alex
Sounds like another cut-price airline.
Thousands left stranded at the terminal with no hope of getting anywhere. But the fat cats always get their pay-off.
This link from MRC on Peter White was published in another thread.
Does anybody know which the 3 MRC Grants mentioned are?
Is GETSET financed by MRC?
This is a very good point, that underscores the misleading information from "one time" testing of strength or even endurance in patients with fatigable disorders.
This is also, I think, at the core of the disbelief that accompanies such diseases. (not only ME ).
It is based on the assumption (which is true for healthy people or even very ill people but with more fixed diseases) that if you are able to walk a certain distance, lift a certain object or do a certain task now, this is a good measurement of your global ability.
Obviously if you don't repeat what you did before, you are "not putting enough effort" (due to some ill defined "sub-conscious problems) or plain malingering.
You are right that proper physiological testing will reveal the true problem, but who does that on a regular basis?
And even if it is done, it will be ignored by most physicians, who don't understand it and therefore think it is obviously not important.
In general I believe that when people use terms like "subconscious" or "silent killer" or any other invisible and impossible to prove or disprove statements, they either have some hidden agenda or try to hide their ignorance (which many times goes with a good dose of arrogance), or totally lack insight of their true knowledge and abilities. More times than not their theories (which they are usually very passionate about) are proven wrong.
It's a very bad combination when such people are given too much power.
But, unfortunately many of them are very charismatic and convincing and therefore reach powerful positions.
Things start to change only after they have managed to create a significant amount of damage.
You can find them in medicine, science, politics. They never let the facts confuse them or make them change their mind.
In fact many of them could fit the DSM-IV definition of narcissistic personality disorder.
Which research do you have in mind? I'm not sure I've seen any studies that correspond in intensity to a 6MWT, though I do agree that a more useful test of capability would involve repeatability over time and measures of PEM.
Hi oceanblue, it is well established that capacity is not repeatable on two days running. This discredits the entire basis of the 6MWT as it presumes repeatability. I am referring to the Pacific Labs studies, plus the Lights, plus the possibility that NADPH gives a spot test on fatigue/capacity. The NADPH finding gives us, potentially if it can be validated this way, an easy blood test to replace the exercise testing. It would be nice if Pacific Labs could test this - the first day testing is still required, but the second day would be just a blood test if this is validated. In addition once this measure has been validated (presuming its not a flop) then we can test both severe and very severe patients as well. I think there is a thread on this on PR somewhere (it also relates to mitochondria, oxidative stress and methylation) but here is the paper (which may be dodgy as its from Wichita, I am not sure):
Furthermore its a condition of ME that we have not just fatigue but fatiguability. Any spontaneous measure is invalidated for ME. They cannot rationally claim that ME is the same as CFS without running into a contradiction unless they also claim that fatiguability is not an issue. Exercise testing has to be a repeat measure.
So to clarify, the 6MWT is only discredited wrt ME and well defined CFS, not for the majority of the population.
People need to be more outspoken about the inclusion criteria, I'm talking about people in positions of power like doctors and MP's. Otherwise the cotton will be pulled over everyone's eyes.
Peter White is simply doing this study to try to get some positive result so that he can continue to push his biopsychosocial agenda
he wants to have stats to quote as he is aware that the 2010 ME Association Survey shows 57% of respondents reported GET made them worse, and the Action for ME survey 2010, published 2011, showed 60.9% of patients said GET made them worse. Similar figures can be found for CBT with around 50% of patients saying it made no difference.
Peter White is acutely aware of these statistics - he quotes that 2010 Action for ME survey saying 75% of patients were happy with their treatments, in fact, a close look at that statistic, shows around 70% rated their experience as very poor, to poor, to best given no other treatment.
Peter White seems to be a master of statistical manipulation and there is no doubt that this latest small scale study is pure desparation on his part to get the stats he wants, - no matter what BIAS, his clinic, his patients, his criteria, his money/funding from other sources, his BIAS.
Hi. Welcome to the forum. Do you happen to have a source for that? I'm interested in the way White spins things in presentations too.
I have to be careful here because I am a researcher also and this is information from a recent paper submission: however it is an open review system therefore I can show some of the comments:
I wrote a paper that I sent to the Journal of the Royal Society of Medicine. The paper was rejected following review. The main reviewer was Prof. Peter White. Here is a small part of his review:
P. White: "My final point is that if the author is going to use patient charity member surveys to support his arguments that current services for patients with CFS and ME are unsatisfactory, then he needs to include the latest such survey that shows that 85% of those surveyed wanted the current services saved, and 74% rated the service received as "best possible", "good" or "fair" (Action for ME, 2011)."
....P. White was objecting to the evidence in my paper taken from the 2001 and 2010 surverys by Action for ME and the ME Association of patient dissatisafction. I didnt like the use of the term 'charity member surveys' as if this was not a valid form of data, you can see that he sought to put doubt in the mind of the editor and diminish the quality of the data.
when I looked at the survey mentioned by Prof. White I found his interpretation of the statistics to be rather disingenuous:
The ME Association Survey I quoted had 4200 responses, the 2011 Survey P. White was referrring to only had 977 responses more worrying, the survey asked patients to comment on 'whether or not they wanted to Save ME/CFS Services in the NHS.
Prof. White quoted the following: ..the latest such survey that shows that 85% of those surveyed wanted the current services saved, and 74% rated the service received as "best possible", "good" or "fair" (Action for ME, 2011)..
Prof. Whites statistic that 74% of patients rated services received as best possible, good and fair paints the picture that patients are satisfied with their services. The actual survey findings show something very different:
Of those patients who had attended an ME/CFS Specialist Clinic they were asked to rate their satisfaction level
- 15.1% rated their experience as very poor
- 10.9% rated their experience as poor
- 28.9 % rated their experience as best possible in the absence of a cure
- 19.9% rated their experience as fair
- 25.2% rated their experience as good
Patients have not reported widespread satisfaction with services, 15.1% said very poor, 10.9% said poor, and 28.9% said best possible given no cure available, and 19.9% said fair. Thats 74.8% of 977 patients who attended specialist ME/CFS clinics only rated their experience as either fair-very poor, while only rated the experience as good. - also 997 patients is a small fraction of the 250,000 UK sufferers. Moderate to severely ill ME patients are almost neglected in such studies.
I was very disappointed with Prof. Whites misrepresentation of the actual statistics of a small scale ME survery to essentially block my reserach paper and to suggest my paper somehow ignored facts, when he ignores the weight of evidence put forward in my paper. - that ME patients are not happy with their level of medical care and support and many feel treatments such as CBT and GET are ineffective or possibly harmful.
Latest P. White Study Proposal: as I said before the latest study proposed by White is an attempt to silence ME charities who do not recommend GET. He even says that in his study proposal. I think what he has done here is taken an idea from the Dutch Group who support Psychotherapy and they recently published GET/CBT via Internet Support as a possible therapy. Here White is taking on that idea to come up with GET-SET ie a bit of come to my clinic and a bit of we will give you support via skype.
This is really dangerous because if he gets the results he wants, he is going to push this as a treatment - psychotherapy via internet and phone. He uses the term GET-SET as another study on GET would look like a waste of money following the PACE and FINE Trials 8 million - hence he has to change up, hence new term, looks new, but same old stuff.
I wonder if we could object to this study on grounds of replication and waste of money with funder and ethical group, also possible harms, given other studies showing harms? -- anyone know more
Did you have a chance to respond to Peter White's review comments before your paper was rejected? If he used misrepresented data to reject your paper that would seem to seriously undermine his case, and therefore the reason for rejection?
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