The name and Peter White's vision of care in the future i.e. fatigue clinics

Tom Kindlon

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Wasn't sure which forum to post it in. But it's about the name issue so I've posted it here.

Peter White's vision for care for the future:

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Report from Working group meeting on MUS/somatisation/bodily distress, Budapest July 1st 2011: [..]

Peter White reported on the experience of Chronic Fatigue clinics in UK. These were set up with government funding for 3 years. Most have continued as their funding has been assimilated by local healthcare funders.

Initial assessment revealed that 42% of patients did not have CFS but had a medical or psychiatric disorder that led to fatigue.

The management of CFS in the clinics consists of CBT and Graded Exercise Therapy with appropriate medical care. Results show that in most clinics there is evidence of improvement particularly in reducing fatigue, but less so on SF-36.

In the future the clinics may extend to treat patients with fibromyalgia and fatigue secondary to physical illness (eg cancer)

http://www.eapm.eu.com/tl_files/content/eaclpp/Working%20Groups/EACLPP_WG_Medically_Unexplained_Symptoms_Budapest_2011.pdf
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One can easily see that there could be generic fatigue clinics the way there are generic pain clinics.

The fatigue in other conditions is much more likely to respond to exercise. It is easy to see the sorts of clinics there would be.

Remaining with the name "chronic fatigue syndrome" facilitates this.
 
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halcyon

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Mr. White made it pretty clear in his recent Medscape article that he's not impressed with the new name at all.

I would suggest that the new proposed name of SEID may be less helpful. Systemic implies that the condition affects many body systems, but even the most replicated abnormality, of a downregulated hypothalamic-pituitary adrenal axis, only affects a minority of patients and is probably a secondary phenomenon.[23] The report itself suggests that other replicated findings in other systems, such as reduced natural killer cell activity, are nonspecific.[2]Exertion intolerance is consistent with a characteristic feature of the condition, but another characteristic feature is that the fatigue is not relieved by rest,[2,7,24] so the illness is more than just being ill after exertion. Disease implies that there is an established pathology, but the report itself again suggests that no pathology has been properly identified. A more convincing name or names for the condition will come from a better understanding of its pathophysiology, which itself will come from studying the heterogeneous subgroups that many researchers and clinicians already accept as the reality of this condition.[25] The definition of a syndrome defined by chronic fatigue, CFS, is consistent with our current understanding.
If he has his way, it will be business as usual in the UK for the foreseeable future. The disease will remain CFS, and the treatments will be CBT and GET.
 

Tom Kindlon

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Mr. White made it pretty clear in his recent Medscape article that he's not impressed with the new name at all.

I would suggest that the new proposed name of SEID may be less helpful. Systemic implies that the condition affects many body systems, but even the most replicated abnormality, of a downregulated hypothalamic-pituitary adrenal axis, only affects a minority of patients and is probably a secondary phenomenon.[23] The report itself suggests that other replicated findings in other systems, such as reduced natural killer cell activity, are nonspecific.[2]Exertion intolerance is consistent with a characteristic feature of the condition, but another characteristic feature is that the fatigue is not relieved by rest,[2,7,24] so the illness is more than just being ill after exertion. Disease implies that there is an established pathology, but the report itself again suggests that no pathology has been properly identified. A more convincing name or names for the condition will come from a better understanding of its pathophysiology, which itself will come from studying the heterogeneous subgroups that many researchers and clinicians already accept as the reality of this condition.[25] The definition of a syndrome defined by chronic fatigue, CFS, is consistent with our current understanding.

If he has his way, it will be business as usual in the UK for the foreseeable future. The disease will remain CFS, and the treatments will be CBT and GET.
Yes, keeping CFS maintains the status quo with CBT and GET as evidence-based treatments for the condition, etc.
 

alex3619

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Yes, keeping CFS maintains the status quo with CBT and GET as evidence-based treatments for the condition, etc.
Something I am wondering about is whether we should ever use "evidence based" without the scare quotes. Its not really evidence based, its just claimed to be evidence based because they met simplistic tickbox criteria without adequately establishing a scientific basis for their claim. When "evidence based" is cited they often add the words "Gold standard", implying its the highest standard of evidence.

When I look at the results, can I say PACE (for example) is the highest standard of evidence? No. It had the potential but they failed to meet it. Was it double blinded? No. Did it have adequate controls? No. So under evidence based methodologies the study might be due to a downgrade in evidence quality. Were there objective measures likely to be minimally influenced by bias etc.? Yes, but improperly and inadequately employed. Did the objective evidence validate claims? No. Were the response rates and effect sizes large enough to be a clear response? No. Were there any other issues that might invalidate or bias the study. Lots and lots and lots.

I would downgrade PACE not one but two levels of evidence, and am considering a full downgrade to no better than anecdotal. Further some of the issues are so grievous that I wonder if a call should be made to retract all of this research.

Where is the economic analysis of outcomes in financial terms? How do we know these clinics are even worth the money? These are pie in the sky promises that are never delivered from what I can see so far. If not, why don't they produce a definitive study? How many patients improve enough for full time work and a good quality of life, stratified by illness severity? Where is the analysis of the benefit to society versus the cost of treatment? Serious economic analysis should be mandatory. Let me be clear and say this is about the clinics, and CBT/GET in the real world, not just a study.
 
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halcyon

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When I look at the results, can I say PACE (for example) is the highest standard of evidence? No. It had the potential but they failed to meet it. Was it double blinded? No. Did it have adequate controls? No. So under evidence based methodologies the study might be due to a downgrade in evidence quality. Were there objective measures likely to be minimally influenced by bias etc.? Yes, but improperly and inadequately employed. Did the objective evidence validate claims? No. Were the response rates and effect sizes large enough to be a clear response? No. Were there any other issues that might invalidate or bias the study. Lots and lots and lots.
Even if it was all those things, wouldn't it still require independent verification? It's amusing that the psychs comment on every organic finding that comes out saying "that's nice, but the finding will need replication" yet for some reason the same standard didn't apply to the PACE trial. And based on that single unverified study, they prescribe CBT and GET treatment widely? Yeesh.
 

Tom Kindlon

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Something I am wondering about is whether we should ever use "evidence based" without the scare quotes. Its not really evidence based, its just claimed to be evidence based because they met simplistic tickbox criteria without adequately establishing a scientific basis for their claim. When "evidence based" is cited they often add the words "Gold standard", implying its the highest standard of evidence.

When I look at the results, can I say PACE (for example) is the highest standard of evidence? No. It had the potential but they failed to meet it. Was it double blinded? No. Did it have adequate controls? No. So under evidence based methodologies the study might be due to a downgrade in evidence quality. Were there objective measures likely to be minimally influenced by bias etc.? Yes, but improperly and inadequately employed. Did the objective evidence validate claims? No. Were the response rates and effect sizes large enough to be a clear response? No. Were there any other issues that might invalidate or bias the study. Lots and lots and lots.

I would downgrade PACE not one but two levels of evidence, and am considering a full downgrade to no better than anecdotal. Further some of the issues are so grievous that I wonder if a call should be made to retract all of this research.

Where is the economic analysis of outcomes in financial terms? How do we know these clinics are even worth the money? These are pie in the sky promises that are never delivered from what I can see so far. If not, why don't they produce a definitive study? How many patients improve enough for full time work and a good quality of life, stratified by illness severity? Where is the analysis of the benefit to society versus the cost of treatment? Serious economic analysis should be mandatory. Let me be clear and say this is about the clinics, and CBT/GET in the real world, not just a study.
There was this paper on the PACE Trial:

Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0040808
that reported GET and CBT were cost-effective (largely by pricing care at the average wage per hour rather than a lower amount)
 

Tom Kindlon

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Even if it was all those things, wouldn't it still require independent verification? It's amusing that the psychs comment on every organic finding that comes out saying "that's nice, but the finding will need replication" yet for some reason the same standard didn't apply to the PACE trial. And based on that single unverified study, they prescribe CBT and GET treatment widely? Yeesh.
There are lots of GET and particularly CBT studies that have found benefit (of a sort). So they can say there are replications. While pretty much any other treatment doesn't have two positive RCTs behind it.
 

alex3619

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There was this paper on the PACE Trial:

that reported GET and CBT were cost-effective (largely by pricing care at the average wage per hour rather than a lower amount)
Yes, but they did not do any proper economic analysis, and NOT on clinics. It was an inadequate analysis quite aside from the flaws you mentioned. When the Belgian government ran a review they found the clinics to be ineffective. I strongly suspect this would be the same everywhere.

Furthermore they used the same flawed measures used in PACE. As I have commented, I think this research probably needs to be retracted. So any further results or papers from such poor research is not relevant, or can at least be considered low quality evidence.

In any case the clinics are not studies. This is real world application. There is no substantive evidence other than claims that these clinics work. They need to be investigated. The reason I mention economic issues is because a large part of the argument for CBT/GET is based on cost savings. Let them prove such savings eventuate.

No CBT/GET clinic for CFS that has been investigated has been shown to be effective. They should publish their data. They might not even be collecting adequate data to determine effectiveness. In which case it requires independent review.
 
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WillowJ

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right, CBT and GET have been repeated a lot. PACE and FINE were the biggest trials. Most of the trials show that they can get patients to change answers on surveys about how they feel their fatigue is (after being repeatedly told symptoms are not important),

but can't show any actually useful difference in how the patient is able to do more things (work, shop, make food, go hiking, etc.) or not needing as much medical treatment. This includes ICF patients. Regardless of what patient is being studied, no one can demonstrate that CBT/GET a' la pace is working for anyone.
 
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alex3619

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And based on that single unverified study, they prescribe CBT and GET treatment widely?
They would reply there are lots of studies, and PACE was simply the best. The real issue is a lack of objective outcomes in most of these studies. There is little doubt now there is very little if any improvement in fitness. There are no objective outcome measures that show a good response, and where such measures are used CBT/GET typically fails. The claims are nearly all based on subjective evidence and in conflict with the objective evidence where such evidence exists.
 

Aidan Walsh

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Classic White - muddy the waters as far as possible and you won't know what works or not for which patients.

I admire his guile. I still think he's a shit though.
He is one lost cannon if someone came out tomorrow with replicated cause(s) he would deny it completely all the
CGT/GET was based on fraud from day one...If there is no infection then why did the UK Govt. take all the documents

& file them under a secret acts law for National Security??? Something does not add up that's why I plan to sue from
the Private sides of laws Commercial Liens forthcoming including SIMON/PETER,CDC/NIH/FDA including G-

Countries...Watch how I am going to change things for everyone now...It will cost all of them 100's of Millions hopefully it will go into the Billions once I am finished filing these documents I will Arrest them all in Commerce...The

CDC/NIH/FDA in Commerce Laws are actually 'persons' so is IBM, AIR CANADA, MICROSOFT, SIMON/PETER :)
 
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Aidan Walsh

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Peter White is a corporate shill.
Watch how I now sue him Peter White including that other Weasle Simon I am coming for house cars savings bonds stocks I will leave both of them penniless...As soon as I file the documents a certified Copy will also go to all Major

Banks including the London Stock Exchange which will put an immediate Lien on any accounts...I have had as much as I am going to take from these 2 fraud artists even the British Government gets attached to the Lien afterall all they

are 'all' registered Corporations in Commerce...I do not use the Police or any Complaints Commissions I use solely Commerce to sue for damages...Once 90 days passes it becomes a Monetary Bond any Bank will buy it right out that

same day...They will not have a pot to piss in once I am done with these 2 Hoods...I will have the last laugh & I will then publish online the entire document as soon as it is sold...Their houses are now my future investments portfolios...I'm

coming for everything...So Help me God I have learned from the best in the business in Commerce thanks so very much Winston Shrout you opened my eyes fully to the Commerce fraud upon us all you are a Champion of the people... www.wssic.com bless you Sir :)'s
 
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Snowdrop

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this is a public forum and it is possible that said fellows may come across this thread at some point,
Good thought. Though in that case I'd like to suggest that if they are going to insist on serving up CBT/GET that they also offer up some entertainment. I was thinking along the lines of balloons, clowns, jugglers, a knife thrower perhaps. :angel:
 

redviper

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Could care less if that clown Peter White or any of his like minded associates stumble across this thread. The blood of thousands of innocent people is on their hands as well as the untold amount of suffering that they have caused ME patients across the world. You want to make your career off preying off the sick and marginalized? You get what you deserve.
 
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Aidan Walsh

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Good thought. Though in that case I'd like to suggest that if they are going to insist on serving up CBT/GET that they also offer up some entertainment. I was thinking along the lines of balloons, clowns, jugglers, a knife thrower perhaps. :angel:
If they are having balloons, clowns, jugglers, knife throwers count me in for some CBT 'Kok balls torture' Comedy at its best maybe Chernobyl they could work afterall isn't this radiation sickness CFS