How a phase 3 clinical trial went off the rails and led patients around the world to receive inappropriate therapies which, in some cases, caused them profound and lasting harm.
Hi Katie, congratulations on completing this history. It’s a very useful resource. I wasn’t sure what you meant by the ‘permanent insurance industry’.
You mention that GET is no longer recommended by medical professionals in the UK. Unfortunately this appears not to be the case. Some professionals are relabelling what is essentially GET as ‘pacing’. This happened to my son who has ME/long Covid. The long covid clinic at the Evelina is lead by a psychiatrist and the team there recommended that he find a baseline of activity and gradually increase, also sleep hygiene. They repeatedly mentioned deconditioning and referred to him having a ‘fear’ of activity. This appears to be a common approach in clinics working with young people with long Covid in the UK. Many of these young people meet criteria for ME and experience PEM. I’m also aware of adults diagnosed with ME who have been offered GET by the persistent physical symptoms unit at the Maudsley. I understand that Dr Charles Shepherd from the ME Association has been contacting clinics in the UK that continue to offer GET to people with ME.
Again, well done. As someone who has long Covid/ME I know how much it takes and what you have to sacrifice to produce something like this!
About 'permanent insurance industry' - to be honest I don't know much about insurance, but my understanding is that with permanent insurance, if you become disabled the insurance pays out for the rest of your life. It's different from term insurance which pays out for a fixed term of perhaps 10, 20 or 30 years.
I got the phrase from this press 2010 release from professor Malcolm Hooper, who formally complained to the Medical Research Centre about the PACE trial. Here's a quote:
"Since 1993, the giant US permanent health insurance company UNUMProvident has been advising the UK DWP about the most effective ways of curtailing sickness benefit payments. The PACE Trial is run by psychiatrists of the Wessely School, most of whom work for the medical and permanent health insurance industry, including UNUMProvident." - https://www.investinme.org/Article400%20Magical%20Medicine%20Press%20Release.htm
Hi Mary, I'm so incredibly sorry to hear what happened to you son. Thanks for sharing this story, I hadn't realised things like that are still happening in some clinics. In my opinion this should be treated as medical malpractice, and the clinicians involved should face losing their licence to practice medicine.
The PACE trial proponents have caused irreparable harm to so many.
I appreciate you start out by explaining that the Oxford criteria is an obsolete inaccurate criteria because it doesn't require post exertional malaise.
Research into ME needs to be based on people who have ME. For that reason the CFS-Fukuda should also not be used as it too does not require post exertion exacerbation of symptoms.
Thanks! This is an excellent, comprehensive set of resources for people who want to learn more about ME. It has sections for Patients, Clinicians, Caregivers, Severe ME, and general info.
Thanks. There is a lot of good info out there about myalgic encephalomyelitis... but it can be hard to find. We created that in hopes it would make things easier. It gets updated as new info comes to light.
Hi Katie, congratulations on completing this history. It’s a very useful resource. I wasn’t sure what you meant by the ‘permanent insurance industry’.
You mention that GET is no longer recommended by medical professionals in the UK. Unfortunately this appears not to be the case. Some professionals are relabelling what is essentially GET as ‘pacing’. This happened to my son who has ME/long Covid. The long covid clinic at the Evelina is lead by a psychiatrist and the team there recommended that he find a baseline of activity and gradually increase, also sleep hygiene. They repeatedly mentioned deconditioning and referred to him having a ‘fear’ of activity. This appears to be a common approach in clinics working with young people with long Covid in the UK. Many of these young people meet criteria for ME and experience PEM. I’m also aware of adults diagnosed with ME who have been offered GET by the persistent physical symptoms unit at the Maudsley. I understand that Dr Charles Shepherd from the ME Association has been contacting clinics in the UK that continue to offer GET to people with ME.
Again, well done. As someone who has long Covid/ME I know how much it takes and what you have to sacrifice to produce something like this!
In the article I've changed 'permanent insurance industry' to 'insurance industry', which is perhaps less confusing.
About 'permanent insurance industry' - to be honest I don't know much about insurance, but my understanding is that with permanent insurance, if you become disabled the insurance pays out for the rest of your life. It's different from term insurance which pays out for a fixed term of perhaps 10, 20 or 30 years.
I got the phrase from this press 2010 release from professor Malcolm Hooper, who formally complained to the Medical Research Centre about the PACE trial. Here's a quote:
"Since 1993, the giant US permanent health insurance company UNUMProvident has been advising the UK DWP about the most effective ways of curtailing sickness benefit payments. The PACE Trial is run by psychiatrists of the Wessely School, most of whom work for the medical and permanent health insurance industry, including UNUMProvident." - https://www.investinme.org/Article400%20Magical%20Medicine%20Press%20Release.htm
Hi Mary, I'm so incredibly sorry to hear what happened to you son. Thanks for sharing this story, I hadn't realised things like that are still happening in some clinics. In my opinion this should be treated as medical malpractice, and the clinicians involved should face losing their licence to practice medicine.
Thank you very much for taking this on.
Regarding this:
RE: People want to learn as much as possible from the PACE trial for chronic fatigue syndrome, Tom Kindlon, BMJ Letters, paywalled
A free version of this letter can be read here:
Re: College was right not to disclose deliberations about chronic fatigue treatment trial, tribunal rules
https://www.bmj.com/content/347/bmj.f5355/rr/659900
Absolutely excellent summary!
Thank you!
The PACE trial proponents have caused irreparable harm to so many.
I appreciate you start out by explaining that the Oxford criteria is an obsolete inaccurate criteria because it doesn't require post exertional malaise.
Research into ME needs to be based on people who have ME. For that reason the CFS-Fukuda should also not be used as it too does not require post exertion exacerbation of symptoms.
I have been tracking lists of better research (with help) in lists based on International Consensus Criteria & Canadian Consensus Criteria. Can find those here: https://drive.google.com/file/d/1OLvCfM3HAZ4Yn_UELRWLXV8c3BTmwgnR/view
Thanks! This is an excellent, comprehensive set of resources for people who want to learn more about ME. It has sections for Patients, Clinicians, Caregivers, Severe ME, and general info.
Thanks. There is a lot of good info out there about myalgic encephalomyelitis... but it can be hard to find. We created that in hopes it would make things easier. It gets updated as new info comes to light.