As a follow-up to my prior comment to Dr. Breus’ unequivocal endorsement of the PACE trial, here is another comment I just posted on his blog post that illustrates clearly how “journalism” like his serves the insurance industry in their quest to deny disability claims patients are entitled to:
Dr. Breus,
If you still have any questions about how you are playing into the hands of insurers and re-insurers, check out this post by SwissRe, the world’s second largest re-insurer that is collaborating with Peter White of the PACE “trial”:
http://www.swissre.com/clients/newsletters/Managing_claims_for_chronic_f…
[Update 5/15/2016: Some time around January 2016, SwissRe took down the document that I linked to above and quoted from below. That was likely triggered by David Tuller’s series eviscerating the PACE trial and the resulting scrutiny of the fatal flaws of PACE. Before SwissRe deactivated it, the link lead to a SwissRe document entitled “Managing claims for chronic fatigue the active way,” which was published in a SwissRe newsletter. Please scroll down past the quotes to see screen shots.]
Swiss Re’s UK Life & Health Claims team arranged a web-based discussion group with Professor Peter White to describe recent UK-based research into treatments for Chronic Fatigue Syndrome (CFS) in the PACE trial.
Results for those in the group that received “pacing” with SMC were no different than for those receiving SMC alone, which surprised the research team. It had been hypothesized that provision of any therapy in addition to medical care, would have had a better outcome than medical care alone. It is thought that behavioural activation helps to treat the illness itself, whereas “pacing” (staying within limits imposed by the illness) only results in adaptation to the illness.
…
The key message is that pushing the limits in a therapeutic setting using well described treatment modalities is more effective in alleviating fatigue and dysfunction than staying within the limits imposed by the illness traditionally advocated by “pacing”. If a CFS patient does not gradually increase their activity, supported by an appropriate therapist, then their recovery will be slower. This seems a simple message but it is an important one as many believe that “pacing” is the most beneficial treatment.
It is likely that input will be required to change a claimant’s beliefs about his or her condition and the effectiveness of active rehabilitation. Funding for these CFS treatments is not expensive (in the UK, around £2,000) so insurers may well want to consider funding this for the right claimants.
A final point specific to claims assessment, and a question we’re often asked, is whether CFS would fall within a mental health exclusion, if one applies to a policy. The answer to this lies within the precise exclusion wording. If the policy refers to functional somatic syndromes in addition to mental health, then CFS may fall within the exclusion. If the policy doesn’t refer to functional somatic syndromes as well as mental health then it would be difficult to apply. The point made is that a diagnosis of Myalgic Encephalomyelitis or ME (a term often used colloquially instead of CFS) is considered a neurological condition according to the arrangement of the International Classification of Diseases (ICD) diagnostic codes whereas CFS can alternatively be defined as neurasthenia which is in the mental health chapter of ICD10.
It is well established that pacing is essential for the survival of ME patients. “Pushing” is well established to be a recipe for disaster and lasting worsening of health or worse.
Do you find it all improper, Dr. Breus, that Peter White of the PACE “trial” consults for SwissRe on how to use the “trial” results for the insurance company’s benefit? If you don’t agree with the tactics of insurance companies to use the PACE “trial” to deny benefits claimants are entitled to, then I don’t see any other option for you than to distance yourself from your blog entry by posting a correction and an apology in all the places where you posted this sad piece of “journalism.” Of course, if you agree with SwissRe’s and others’ tactics, then you should stand by this post by doing nothing.
Sincerely,
Jeannette Burmeister
Thoughts About M.E. 
the dangers of trying to raise one’s profile by writing about something one knows nothing about for quick and cheap publicity. every once in a while, you will unintentionally poke a hornet’s nest. the way Dr. Breus will deal with this will be a real test of his character and integrity.
Yes. Absolutely. Totally agree. These statements, which are somehow accepted as medical “gospel” are used to deny disability claims — public and private — and deny coverage for medical care and medications for people with ME/CFS.
In the U.S., where governmental social programs are being cut back, this is just another weapon in the arsenal of the anti-ME/CFS faction and those who seek to cut coverage for disability and health care.
These “experts” are so damaging to ME/CFS sufferers. How they can live with themselves is beyond me, but then there are many with no consciences.
I sit here, barely having energy to type, all muscles hurting. I got tired just reading blogs. My arms hurt from typing. I can’t go outside to do any of the errands on my humongous “To Do” list.
Can I read now? Can I even follow a movie on TV?
I don’t know why but my illness seems to be more limiting as I get older and I’m having to think through: Am I giving up my drive and resigning myself to watch TV and read forever? How can I even take care of dental and medical appointments now? I had good intentions in the spring but haven’t been able to do much, certainly not in the summer heat.
If someone isn’t helping they can stay out of this field. To do damage to us is not forgiveable.
I look forward to the day when the research that’s being done to find biomarkers is out — and public! And all those naysayers and ME/CFS deniers are consigned to the dustbin of history.
history will judge folks like Dr. Breus not kindly. i think he’s actually young enough to feel the fall-out from this (unlike Wessely).
Hi-how long have you had the disease? Do you live alone, have a spouse or any assistance? I don’t know how to deal with this disease as it is a disease and not a syndrome as so many people claim. I hate it when people say they have this disease when they don’t have a clue as to what it is. Who is your disability insurance company? Are you being paid past the 24month change in definition? Please provide as much info as you can to help me. Thank you!
I’ve had it for 7.5. And yes, it’s very much a disease.
I have an extremely supportive husband, but am living away from him and my daughter to get twice-a-week Ampligen infusions, which are very helpful. I visit my family about every other week if I am able
I do have lots of help. Otherwise, I wouldn’t know what I’d do.
I do receive private disability benefits. The insurance company will try to cut you off at 24 months claiming you are mentally ill. Unless you are experienced with the area, you need a good lawyer who understands ME. Otherwise, they will screw you.
Hi-I have had Disability Claims Solutions-Linda Nee-handling my claim for about 3 years now and she is fantastic. She knows all of the tricks that the insurance companies play. She got me past the 24moth change in definition when they had me on ROR. She is so reasonable with her fee. I would never pay an attorney as all they care about is taking disabled peoples money and living in their huge homes with their expensive cars, etc while we barely make it from month to month.
Glad Linda has been helpful for you. That’s excellent.
I was disappointed that linked to the harmful CDC website in her recent blog post. But she does all kinds of illnesses i think (not just ME) and most likely is not familiar with the controversy about the CDC website.
But I really am glad she’s been successful for you.
Jeannette-Linda is a major advocate of claimants suffering from ME/CFS and has had success in getting her clients with the disease past the 24 month change in definition as she knows that the disease is not mental but physical. She is a real fighter for all disabled people regardless of their disability. Since she workedd for Unum for so long before being let go for going against the company as a “Whisle Blower” she knows all about their deceit, lies, tricks, etc and has a 98% success rate of getting claim denials overturned for those with ME/CfS. She is a really wonderful woman. K
sorry. just now saw and approved this. was a bit out of pocket, so didn’t check in.
having worked for UNUM, linda would know all their dirty little tricks. i am very glad to have found out about her. i get get asked a lot by people which attorney to go to and i have two amazing guys i refer to. but not everybody may need an attorney.