CFS_for_19_years
Hoarder of biscuits
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Thanks for posting this. Had to dig around a bit to find it, but it's on this page:
http://retractionwatch.com/2015/10/...rs-abound-font-choice-dooms-grant-application
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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study
- Thread starter Daisymay
- Start date
http://retractionwatch.com/2015/10/...rs-abound-font-choice-dooms-grant-application
http://www.cortjohnson.org/blog/2015/10/30/pace-authors-feeling-heat-cbt-chronic-fatigue-syndrome/
Cort Johnson has written one of his easy-to-read pieces on the reply by Professors Peter White, Trudie Chalder and Michael Sharpe to David Tuller's long critique of the £5m/US$8m PACE Trial (the critiques came out last week) and David Tuller's reply to the response from White, Chalder & Sharpe.
He also gives the links to the all of the full pieces.
(October 30 piece)
Separate Phoenix Rising thread: http://forums.phoenixrising.me/inde...at-over-chronic-fatigue-syndrome-trial.40923/
Cort Johnson has written one of his easy-to-read pieces on the reply by Professors Peter White, Trudie Chalder and Michael Sharpe to David Tuller's long critique of the £5m/US$8m PACE Trial (the critiques came out last week) and David Tuller's reply to the response from White, Chalder & Sharpe.
He also gives the links to the all of the full pieces.
(October 30 piece)
Separate Phoenix Rising thread: http://forums.phoenixrising.me/inde...at-over-chronic-fatigue-syndrome-trial.40923/
jimells
Senior Member
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- northern Maine
They are literally killing us and patients should remain polite?
(a mischaracterization of your words for rhetorical purposes, please don't take it personally)
Whenever working people go on strike, occupy factories, block entrances, etc., the strikers are "harassing" the boss, Are these tactics "coercive"? You bet. It is only by raising the social/political and economic/financial cost of current polices that polices are changed. The recent sea change in Dr Collin's policies towards us has happened because relentless pressure on many fronts by our advocates has raised the cost of those policies to a level that he is no longer willing to pay.
Forget all that nonsense about petitioning the government for redress of grievances - that's not how these institutions work or what they respond to. They only "understand" naked power, who has it, and who doesn't (that means us). That doesn't mean petitions and letters to Congress, etc. are completely useless - it just means that those tactics by themselves are not sufficient. In any social struggle, a variety of tactics, strategies, and actors is required, even though they sometimes contradict and work against each other.
If the labor agitators of a hundred years limited themselves to "following the rules" at a time when just forming a union was illegal and frequently deadly, labor unions will still be illegal, there would be no 40 hour work week, no vacations, no holiday pay, no child labor laws, etc. Of course tactics matter, and both their likely effectiveness and their morality must be carefully considered.
Early anarchists believed that by killing corporate managers they could decapitate corporate power and liberate exploited workers. But they failed to account for the fact that for every dead manager, there were a hundred more eagerly waiting for a promotion, and that the state has a nearly limitless capacity and will to ramp up violence. And of course murder greatly increases suffering, a sure indicator that the anarchists' actions were immoral.
It is obvious that death threats to Sir Simon would increase the suffering of his family. But calling him bad names? I think that's something each person needs to decide for themselves.
I don't think that's harassment. That's a protest. Similarly ME patients might protest in a public place (the weller ones), or send letters or petitions to work contact information (both mobile and homebound can do this). Or have meetings. Or other things I can't think of right now.
Sometimes protests are against the law. People have to be willing to accept prison or whatever the current penalty is, for participating, and eventually the rules change (here, anyway), and protest becomes a protected form of speech.
That's probably fair. [edit to clarify: I try to avoid name-calling, but I agree that people can make their own decisions.]
Dr. James Coyne:
I don't think ACTUP used pre-approved communication channels or anything tame like that.
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jimells
Senior Member
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- northern Maine
I dare say the bosses would agree that any actions that interfere with profits or control of the workplace is "harassment". But this is probably not the thread to discuss the sordid and bloody history of the US labor movement, even though this is a topic close to my heart: I was the executive board chair of the IWW (Industrial Workers of the World) when I first got sick.
I would very much prefer to be out in the world talking to workers, as opposed to being confined to a couch. If I ever regain my health, I would certainly pick up where I left off, all those years ago.,,
Ellkaye
Senior Member
- Messages
- 163
5 MILLION POUNDS ON PACE
plain incredible
No microscopes. No scans. Just pen paper and tables and observing people face to face or by phone or having them increase activity..
5 MILLION POUNDS FOR THAT !!!!!!
Just who on earth gives a bunch of psychiatrists FIVE MILLLLLION POOUNDS??
plain incredible
No microscopes. No scans. Just pen paper and tables and observing people face to face or by phone or having them increase activity..
5 MILLION POUNDS FOR THAT !!!!!!
Just who on earth gives a bunch of psychiatrists FIVE MILLLLLION POOUNDS??
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- Messages
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How the Science Media Centre influenced media reporting of PACE in 2011.
The Science Media Centre interviewed a long line of sycophantic 'Experts' to accompany the publication of PACE by the Lancet in 2011. They now sound like complete idiots. :
http://www.sciencemediacentre.org/e...reatments-for-chronic-fatigue-syndromeme-2-2/
17 February 2011
Expert reaction to Lancet study looking at treatments for Chronic Fatigue
Syndrome/ME
'The study made the first definitive comparison of various treatments for CFS/ME to deduce the most effective treatments.'
Dr Alastair Miller, Consultant Physician at Royal Liverpool University Hospital, Clinical lead for CFS services in Liverpool, Independent assessor of trial safety data for PACE trial and Principal Medical Advisor, Action for ME, said:
"Although NICE have previously recommended graded exercise and CBT as treatments for ME/CFS, this was on the basis of somewhat limited evidence in the form of fairly small clinical trials. This trial represents the highest grade of clinical evidence - a large randomized clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported. It provides convincing evidence that GET and CBT are safe and effective and should be widely available for our patients with CFS/ME."
"It is clearly vital to continue our research into biological mechanisms for ME/CFS but recent 'false dawns' for example, over the role of retroviruses (XMRV) have shown how difficult this can be. In the current absence of a biomedical model for the causation and the absence of any pharmacological intervention, we have a pragmatic approach to therapy that works and we should use it."
Dr Derick Wade, Consultant and Professor in Neurological Rehabilitation and Clinical Director, Enablement Directorate, Oxford Centre for Enablement, said:
"CFS is common, and it is vital to know whether treatments proposed and/or used are safe and are effective. Randomised controlled trials provide the best and only reliable evidence on safety and effectiveness of any
intervention in any condition. The trial design in this study was very good, and means that the conclusions drawn can be drawn with confidence.
"This is a very significant finding. It identifies that one commonly used intervention is not effective (and therefore should not be used), and it confirms the effectiveness of two treatments, and their safety. The study suggests that everyone with the condition should be offered the treatment, and every patient who wishes to be helped should be willing to try one or both of the treatments. It also means that we can allocate resources to treatments that will benefit patients and, more importantly, stop allocating treatments that do not have proven efficiency. Further research should identify ways that treatments derived from these may deliver greater benefits.
"Research needs to investigate both treatments and factors that increase the risk of developing CFS. However, it is probably more effective to research treatments, and proving a treatment is effective starts to give clues about
causative factors."
Dr Fergus Macbeth, Director of the Centre for Clinical Practice at NICE, said:
"We welcome the findings of the PACE trial, which further support cognitive behavioural therapy and graded exercise therapy as safe and effective treatment options for people who have mild or moderate CFS/ME. These findings are in line with our current recommendations on the management of this condition.
"We will now analyse the results of this important trial in more detail before making a final decision on whether there is a clinical need to update our guideline. Until then, healthcare professionals should continue to follow our existing recommendations, especially as this latest research appears to endorse them as best practice for the NHS."
Dr Esther Crawley, Consultant Paediatrician and Clinical Lead for the Bath Specialist Paediatrics Chronic Fatigue Syndrome/ME Service, said:
"All children with chronic fatigue syndrome and their parents are desperate for new research to understand how to treat this condition. The next step is to do a study like this for children to find out if these treatments work."
Prof Willie Hamilton, GP in Exeter and Professor of Primary Care Diagnostics, Peninsula College of Medicine and Dentistry, said:
"At least half of patients improved with CBT or GET. The study also allays fears that CBT or GET may be harmful. There are a minority of patients who didn't see improvement so the next step must try and find treatments to help them.
"This study matters: it matters a lot. CFS/ME is common, and causes a lot of suffering. Up until now we have known only that CBT and GET work for some people. We didn't know if pacing worked. This caused a real dilemma - especially for those in primary care. We didn't know whether to recommend pacing, or to refer for CBT or GET. Worse still, not all GPs have access to CBT or GET, so ended up suggesting pacing almost by default. This study should solve that dilemma.
"At a patient level, I now know what to suggest to my patients. Almost as important, it sends a powerful message to PCTs - and the soon-to-be-formed GP consortia - that they must fund CBT or GET. NICE proposed that before
this study came out - the evidence is even stronger now."
Dr Brian John Angus, Clinical Tutor in Medicine and Honorary Consultant Physician, University of Oxford and Centre Leader for the PACE Trial in Oxford, said:
"This study is the largest ever done in CFS/ME and as such is critically important. The study should reassure patients that there is an evidence based treatment that can help them to get better and there is no need to worry about harm from the treatment. The other significant result is that looking at different ways of classifying the condition through different diagnostic criteria do not make any difference to the effect of treatments.
"We do not know what the underlying cause of CFS/ME is. There is ongoing research to find the cause, and I have been involved with this, but none of these studies has shown any consistent evidence of cause never mind any rationale for treatment. However in the meantime I see many patients in my clinic who need help with their fatigue. This was a pragmatic trial to help patients while there is no other treatment available.
"It was extremely rigorous. It was large and it was randomised. The study was carefully conducted in the manner of a drug intervention study to not only establish the superiority of one treatment over the other but also to carefully report any side effects or harm from those treatments. Since the treatments were therapies and not drugs stringent efforts were made to ensure the 'purity' of each treatment and to rapidly report any adverse effects. As a trial this involved a huge amount of checking and cross checking.
"This should mean that GET and CBT should be widely available throughout the country. Despite NICE recommendations I still see patients who are unable to access any treatment for their CFS/ME in their local GP area. Travelling is obviously difficult for patients with CFS/ME. The increase in the availability of CBT therapists for other conditions should be mirrored for CFS/ME.
"The trial was conducted to a high ethical standard. Patients were fully informed and randomised to the different treatments. It was rigorously performed. The study has definitively shown that there is no harm associated with GET."
Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome
(PACE): a randomised trial, by Peter White et al, published in the Lancet at 00.01hr UK time Friday 18 February 2011.
To contact the above please contact the Science Media Centre on 020 7670 2980
Note for editors
The Science Media Centre (SMC) is an independent venture working to promote voices, stories and views from the scientific community to the news media when science is in the headlines. Over 50 sponsors including scientific institutions, media groups, corporate organisations and individuals fund the Centre, with donations capped at 5% of the running costs to preserve its independence. The team at the Centre is guided by a respected Scientific Panel and Board of Advisors. This press release contains the personal opinions of those acknowledged; which represent neither the views of the SMC nor any other organisation unless specifically stated.
.
How the Science Media Centre influenced media reporting of PACE in 2011.
The Science Media Centre interviewed a long line of sycophantic 'Experts' to accompany the publication of PACE by the Lancet in 2011. They now sound like complete idiots. :
http://www.sciencemediacentre.org/e...reatments-for-chronic-fatigue-syndromeme-2-2/
17 February 2011
Expert reaction to Lancet study looking at treatments for Chronic Fatigue
Syndrome/ME
'The study made the first definitive comparison of various treatments for CFS/ME to deduce the most effective treatments.'
Dr Alastair Miller, Consultant Physician at Royal Liverpool University Hospital, Clinical lead for CFS services in Liverpool, Independent assessor of trial safety data for PACE trial and Principal Medical Advisor, Action for ME, said:
"Although NICE have previously recommended graded exercise and CBT as treatments for ME/CFS, this was on the basis of somewhat limited evidence in the form of fairly small clinical trials. This trial represents the highest grade of clinical evidence - a large randomized clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported. It provides convincing evidence that GET and CBT are safe and effective and should be widely available for our patients with CFS/ME."
"It is clearly vital to continue our research into biological mechanisms for ME/CFS but recent 'false dawns' for example, over the role of retroviruses (XMRV) have shown how difficult this can be. In the current absence of a biomedical model for the causation and the absence of any pharmacological intervention, we have a pragmatic approach to therapy that works and we should use it."
Dr Derick Wade, Consultant and Professor in Neurological Rehabilitation and Clinical Director, Enablement Directorate, Oxford Centre for Enablement, said:
"CFS is common, and it is vital to know whether treatments proposed and/or used are safe and are effective. Randomised controlled trials provide the best and only reliable evidence on safety and effectiveness of any
intervention in any condition. The trial design in this study was very good, and means that the conclusions drawn can be drawn with confidence.
"This is a very significant finding. It identifies that one commonly used intervention is not effective (and therefore should not be used), and it confirms the effectiveness of two treatments, and their safety. The study suggests that everyone with the condition should be offered the treatment, and every patient who wishes to be helped should be willing to try one or both of the treatments. It also means that we can allocate resources to treatments that will benefit patients and, more importantly, stop allocating treatments that do not have proven efficiency. Further research should identify ways that treatments derived from these may deliver greater benefits.
"Research needs to investigate both treatments and factors that increase the risk of developing CFS. However, it is probably more effective to research treatments, and proving a treatment is effective starts to give clues about
causative factors."
Dr Fergus Macbeth, Director of the Centre for Clinical Practice at NICE, said:
"We welcome the findings of the PACE trial, which further support cognitive behavioural therapy and graded exercise therapy as safe and effective treatment options for people who have mild or moderate CFS/ME. These findings are in line with our current recommendations on the management of this condition.
"We will now analyse the results of this important trial in more detail before making a final decision on whether there is a clinical need to update our guideline. Until then, healthcare professionals should continue to follow our existing recommendations, especially as this latest research appears to endorse them as best practice for the NHS."
Dr Esther Crawley, Consultant Paediatrician and Clinical Lead for the Bath Specialist Paediatrics Chronic Fatigue Syndrome/ME Service, said:
"All children with chronic fatigue syndrome and their parents are desperate for new research to understand how to treat this condition. The next step is to do a study like this for children to find out if these treatments work."
Prof Willie Hamilton, GP in Exeter and Professor of Primary Care Diagnostics, Peninsula College of Medicine and Dentistry, said:
"At least half of patients improved with CBT or GET. The study also allays fears that CBT or GET may be harmful. There are a minority of patients who didn't see improvement so the next step must try and find treatments to help them.
"This study matters: it matters a lot. CFS/ME is common, and causes a lot of suffering. Up until now we have known only that CBT and GET work for some people. We didn't know if pacing worked. This caused a real dilemma - especially for those in primary care. We didn't know whether to recommend pacing, or to refer for CBT or GET. Worse still, not all GPs have access to CBT or GET, so ended up suggesting pacing almost by default. This study should solve that dilemma.
"At a patient level, I now know what to suggest to my patients. Almost as important, it sends a powerful message to PCTs - and the soon-to-be-formed GP consortia - that they must fund CBT or GET. NICE proposed that before
this study came out - the evidence is even stronger now."
Dr Brian John Angus, Clinical Tutor in Medicine and Honorary Consultant Physician, University of Oxford and Centre Leader for the PACE Trial in Oxford, said:
"This study is the largest ever done in CFS/ME and as such is critically important. The study should reassure patients that there is an evidence based treatment that can help them to get better and there is no need to worry about harm from the treatment. The other significant result is that looking at different ways of classifying the condition through different diagnostic criteria do not make any difference to the effect of treatments.
"We do not know what the underlying cause of CFS/ME is. There is ongoing research to find the cause, and I have been involved with this, but none of these studies has shown any consistent evidence of cause never mind any rationale for treatment. However in the meantime I see many patients in my clinic who need help with their fatigue. This was a pragmatic trial to help patients while there is no other treatment available.
"It was extremely rigorous. It was large and it was randomised. The study was carefully conducted in the manner of a drug intervention study to not only establish the superiority of one treatment over the other but also to carefully report any side effects or harm from those treatments. Since the treatments were therapies and not drugs stringent efforts were made to ensure the 'purity' of each treatment and to rapidly report any adverse effects. As a trial this involved a huge amount of checking and cross checking.
"This should mean that GET and CBT should be widely available throughout the country. Despite NICE recommendations I still see patients who are unable to access any treatment for their CFS/ME in their local GP area. Travelling is obviously difficult for patients with CFS/ME. The increase in the availability of CBT therapists for other conditions should be mirrored for CFS/ME.
"The trial was conducted to a high ethical standard. Patients were fully informed and randomised to the different treatments. It was rigorously performed. The study has definitively shown that there is no harm associated with GET."
Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome
(PACE): a randomised trial, by Peter White et al, published in the Lancet at 00.01hr UK time Friday 18 February 2011.
To contact the above please contact the Science Media Centre on 020 7670 2980
Note for editors
The Science Media Centre (SMC) is an independent venture working to promote voices, stories and views from the scientific community to the news media when science is in the headlines. Over 50 sponsors including scientific institutions, media groups, corporate organisations and individuals fund the Centre, with donations capped at 5% of the running costs to preserve its independence. The team at the Centre is guided by a respected Scientific Panel and Board of Advisors. This press release contains the personal opinions of those acknowledged; which represent neither the views of the SMC nor any other organisation unless specifically stated.
.
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Ellkaye
Senior Member
- Messages
- 163
Pretty horrific stuff really
Observationally the sequence of events is bizarre.
Not only for Pace, but also for other things going on around that same time.....
They re trying to call the same shots they did in the 70s 80s 90s 2000.....
But digital and internet communication today is miles ahead of them all.
The patients are connecting and communicating about the real truth here
Observationally the sequence of events is bizarre.
Not only for Pace, but also for other things going on around that same time.....
They re trying to call the same shots they did in the 70s 80s 90s 2000.....
But digital and internet communication today is miles ahead of them all.
The patients are connecting and communicating about the real truth here
Ellkaye
Senior Member
- Messages
- 163
Do you have the link for this show please?
Is it radio or tv?
Is it radio or tv?
Here's the show: http://www.hbo.com/last-week-tonight-with-john-oliver
It's on HBO in the states. Oliver is a comedian who takes on real issues of injustice/stupidity on his show. Someone (MEAction? can't remember) had a campaign to write him to propose do do a story on ME/CFS when Congress zeroed the CDC budget. People did write but the show didn't pick it up. But I think the latest developments may also be up his alley?
It's on HBO in the states. Oliver is a comedian who takes on real issues of injustice/stupidity on his show. Someone (MEAction? can't remember) had a campaign to write him to propose do do a story on ME/CFS when Congress zeroed the CDC budget. People did write but the show didn't pick it up. But I think the latest developments may also be up his alley?
Kati
Patient in training
- Messages
- 5,497
Ok I'm kind of freaked out. i just exchanged a few tweets about why David Tuller did not publish his blogpost in a peer reviewed journal. That person has 1.4 million followers and somehow seems well respected in the medical world.
Said that sure enough a little exercise could not hurt us. So I sent him/her the gene expression paper and the Snell/Stevens CPET original study.
i just wanted to share with you all. Nothing needs to be done, he/she will contact David Tuller but I suggested they read the blogpost before they make an opinion.
It is just telling that social media is reaching, and you never know who is going to read next. So get out there tweeting and engaging outside our community.
Said that sure enough a little exercise could not hurt us. So I sent him/her the gene expression paper and the Snell/Stevens CPET original study.
i just wanted to share with you all. Nothing needs to be done, he/she will contact David Tuller but I suggested they read the blogpost before they make an opinion.
It is just telling that social media is reaching, and you never know who is going to read next. So get out there tweeting and engaging outside our community.
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You never know exactly where or when the critical links are going to happen. Just have to keep putting the facts and arguments about, and let it happen from there somehow.
Kati
Patient in training
- Messages
- 5,497
Yes @Sean, but what is also important is to engage outside our community. Friend people talking about health. Once in a while, answer and frame it in our own context. i was answering from a post discussing medical practitioners having trouble interpreting the evidence.
Bingo! This links to PACE trial nicely.
CFS_for_19_years
Hoarder of biscuits
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- 2,396
- Location
- USA
Way to go Kati!
It looks like she went from saying "Exercise is awesome" to, "OK, I'll read Tuller's work."
1.4 million followers is amazing! I wonder what she's done to create that.
Understand. That is kind of what I was saying. We need to keep spreading the story around until it takes properly, somewhere, sometime, somehow.
Kati
Patient in training
- Messages
- 5,497
Makes me wonder tooWay to go Kati!
It looks like she went from saying "Exercise is awesome" to, "OK, I'll read Tuller's work."
1.4 million followers is amazing! I wonder what she's done to create that.
worldbackwards
Senior Member
- Messages
- 2,051
More from Tuller. Not read it yet:
http://www.virology.ws/2015/11/04/t...really-adopt-a-strict-criterion-for-recovery/
http://www.virology.ws/2015/11/04/t...really-adopt-a-strict-criterion-for-recovery/