I recently was denied continued long term disability benefits through my employer. The reviewer made many ridiculous statements. The most maddening one was made based on a phone conversation the reviewer apparently had with my (now former) GP/Primary Care Physician. She told him that she recommended I do "graded aerobic exercise" and I refused. She also said not complying with her recommendations has most likely contributed to why I'm not getting better. I'm appealing and pretty pissed by the ignorant comments that were made about me.
It is interesting that the 'school' of psychiatrists who espouse CBT/GET for ME/CFS have close links with the insurance industry. The Chief Medical Officer for Scottish Provident who reviewed my claim for Scottish Provident was Prof Peter White who also heads the ME/CFS clinic at Barts. This clinic only 'treats' mild/moderate cases with - you've guessed it - CBT/GET. Even NICE doesn't recommend CBT/GET for the severely affected, yet that didn't stop PW advising my insurer that my claim should be refused until I undertook CBT/GET again.
I've just recently been told by a doctor that I needed to try some other treatments before even bothering to apply, as they don't accept supplements as a real treatment. She never told me what those treatments were that I should be trying, but she did try to get me to do GET. It's frustrating, as it's never been claimed as a viable treatment for severe CFS but all the organisations withhold assistance if you don't get it. I kept trying to say to my doctor that I can't even manage daily life, how can I manage GET, but she just said you just increase things gradually, like instead of just walking to your mailbox, walk another few metres each time. I didn't think to say at the time, but really.... I do that every day. Every day, we fight to get through each day, therefore we are ALREADY pushing a little bit extra each day. It's just that, you know, it doesn't fix us like it's supposed to lolThough I was so sick I couldnt even remain seated at an appointment and was hence having to lay on floor so not to pass out completely, I had trouble getting onto a disability pension (though I had doctors backing me for it). I ended up having to appeal the disability pension knock backs on a further two occassions. My case ended up having to be appealled at the very top level in Australia's capital city Canberra (when Im in Sth Australia, so it ended up having to be heard in another state).
The reason why I got knocked back on one of those occassions was due to "not undergoing treatments" .. I assume from that they meant not undergoing GET/CBT/rehab. seeing my ME/CFS specialist did have me on a lot of supplements and so I was having that treatment but just not any GET or CBT.
When I finally did get it, the assessor was horrified I hadnt been given it the first time due to how severe I was (I couldnt even stay awake all day and had nearly 90 symptoms).
That sounds like wonderful progress. It might take a while to filter through the worldwide community, but hopefully this plus the PACE trial being revealed will assist in giving us a better future.
I forgot where your thread on this was, but thought this comment under the White article could be of interest to you:
https://discussion.theguardian.com/comment-permalink/84385689And even worse, I only did CBT/GET because I needed the 'evidence' of the clinic to claim the benefits Employment Support Allowance and Disability Living Allowance in order to live. There are no other ME 'specialists' in the UK and the way White and Wessley have construed the illness makes it impossible to see a neurologist (although if they are like Suzanne O'Sullivan, who would want to?)
If I'd pulled out of CBT/GET part way through I'd have lost my benefits and the roof over my head for the second time. That's not medical treatment, that's coercion.
It followed on from this comment:
Yes, patients with ME/CFS have suffered for years and it's directly because of the people named in this article and their insistence about PACE and GET and CBT.
I was first diagnosed with ME in 1988. I was 10 years old and a dose of tonsilitis left me bedbound. I had always been a sickly kid after a bout of life threatening bacterial meningitis but I'd also been active loving horseriding, cycling, tennis, athletics and simply running around and then one day I couldn't get out of bed. Every exertion caused what felt like a hangover or what is known as post extertional fatigue.
At the age of 38 I'm still ill. Which is a very long time to believe I'm ill without evidence. I haven't completed a full year of education, work or training since 1988. I've had to give up everything that every meant anything to me from a career, to education to having children ro personal relationships. I've been homeless because of my illness.
And for most of that time I believed I was really just lazy and not trying hard enough and couldn't understand why my body kept letting me down. I pushed through and just got sicker and sicker. I went to the CBT suggested by PACE which was nothing like the CBT for the mental health conditions I have (depression, anxiety and PTSD connected to abuse) and was constantly told I was weak and not trying hard enough. The only negative beliefs in that room were from my CBT therapist about me and ME.
Even when I was vomiting into Alastair Santhouse's bin in his office unable to stand up with fatigue and having heart palpitations he told me it was 'false illness beliefs' and I should try GET. That was the day I started listening to my body and pacing. Four years later my health is in a remission that allows me to live a normal enough life to be able to eat, wash, do laundry, have personal relationships and get out of the house even if I haven't been more then five miles from home in 4 years.
Despite White and Chalder's belief that ME is a psychiatric illness, I have never been offered psychiatric medication or the opportunity to see the mental health team. They aren't offering anything for people like me other than to believe their ideas. If my illness is a psychological one and not the physical one I live with, why am I only offered one kind of therapy and no medication? Why have people with ME been falsely accused of death threats when we refused treatments that made us worse and we had no choice in.
I have no stigma about mental illness but ME is not a mental illness. My reduced blood volume and heart issues prove that as does the current biomedical research. What I object to is the dehumanising 'treatment' forced on us without any attempt to listen to what sick people are saying. There have at least been attempts to stop doing that with mental health patients, but it's positively encouraged with ME sufferers.
The cruelty with which we are treated is the insult to the injury of such a serious disease. I had to ask for 25 years to get pain relief for my myalgia. Doctors like Peter White and Trudie Chalder meant that as a child I was left crying at night in pain because I just believed I was sick. I have ended up with permanent heart and bowel damage because other health issues were written off as 'attention seeking' because doctors no longer trust people with ME because of the psych view of our illness.
These doctors owe 17 million people world wide a heartfelt apology. They have done us great harm under the guise of 'do no harm' and they have destroyed lives and cost the economy billions. I note that the DWP's involvement in the PACE trial wasn't mentioned in this self justification article...
It was P.White who commented on my insurance claim for the insurance company. Without seeing me he stated that my heath issues were not significant and due to weight and they shouldn't pay out... I assume it's the same chap ;-) so he definitely helped one insurance company assess a total incapacity benefit claim.
I pushed through and just got sicker and sicker.