As i have mentioned before (see CBT (2) and CBTupdate) i get an HPI payment through my employer’s insurance scheme, and they forcefully “encouraged” me to go to CBT.
Recently i went to see my NHS specialist and the insurance company wrote to him for a copy of his report (they like to see everything related to my health). He has written them a great letter and i thought i would share my joy by copying the important parts below:
Her condition has deteriorated significantly…her physical activity is reduced to 5-10 minutes without needing to rest… She is dependant for her ADLs (Activities of Daily Living) on assistance from her partner. Her memory and concentration is poor. She needs to sleep during the day.
She is not fit for work of any kind at present and is unlikely to be fit for work in the next six months, as a minimum.
Since she last had involvement with our team her condition has deteriorated. This is in part because you company required her to attend CBT with a therapist who has no knowledge of the management of CFS/ME – this has contributed substantially to her decline and was an entirely inappropriate intervention which should have been discussed with me first, as her treating clinician.
Her depression is secondary to her underlying physical condition. There are no secondary psychological conditions preventing her recovery.
I would note that from the tone of your letter and from the approach you have taken to my patient that you view her illness as entirely a psychological one. This is entirely unacceptable and demonstrates an inadequate knowledge of the current theories of the aetiology of chronic fatigue syndrome. CFS(ME) is classified as a neurological disease under ICD-10 and as a physical disabling condition in the NICE guidelines of 2007. Current research has shown that there is a genetic susceptibility to develop the illness, which in about 50% of cases can be triggered by infection, as in (my) case. We believe that infection leads to a dysregulation of the immune system, probably involving the IL-6 – IL6R system, which in turn leads to generalised autonomic dysfunction, the degree of which can be correlated directly to the level of fatigue. The muscle pain in CFS(ME) has been shown to be due to lactic acid accumulation in the muscles secondary to abnormal muscle blood flow. Functional brain imaging and neuroendocrine testing has shown that depression and CFS(ME) are completely distinct. I trust that henceforth you will treat her condition from the appropriate medical perspective.
It is so good to have this statement of support from the specialist. Hopefully it will keep the insurance company off my back for some time, although since i told them how i was not well enough to go to CBT any more they have not contacted me much at all, just sending the annual review documents/forms to fill in. After ringing me every two weeks over a long period before i went to CBT to check how i “felt” about it, and me forcing myself to go twice, despite how totally draining it was to answer an hour of personal questions, and not wanting to go at all, there seem to have been no repercussions to me stopping it. If only i had known that before! I think the insurance company are very fickle…
On a more general note it is so reassuring to read his statement about CFS/ME. Despite having seen him several times before and attending regular group sessions with his team, i was never completely sure of how he felt about the illness and it’s causes etc, which affected my experience in those groups. The support they offer is obviously very limited by the NICE guidelines, and i found it of limited use (despite this, the specialist advises me to go again – deep joy), but it is good to know what he thinks. He genuinely seems to care about pwME and our cause and wants to help us. It must be very difficult for him not to be able to do more.
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November 6, 2008 at 5:36 pm
Rachel M
I was also very happy to read what your specialist’s opinon about ME/CFS. It is wonderfl to know that you have positive support from him, which makes difference in your quality of life. 😀
November 6, 2008 at 10:14 pm
cusp
Wow what a great letter. If only we coud all get that sort of document to send t ourinsurnace comapnies and tell them to stick their attitude to ME where the sun no longer shines. My psych came to see me 6 weeks ago and today I got a letter from the insurance company teling me that he still had not submitted his report because he had been on holiday and had not had time to dictate it prior to leaving. Talk about being left hanging.
Glad you’ve had some success with the alternative therapies and that your new regime (leaving the dog walks to someone else) is helping
November 7, 2008 at 10:45 am
ashysheela
yes Cusp, that is partly why i posted it, to show what it is possible to get! i wish i had had this over two years ago, then i would have felt much more able to assert myself when they were being unreasonable and causing me a LOT of stress. Feel free to use it as an example, take it to whoever and say “i need something like this!”
November 7, 2008 at 10:50 am
ashysheela
You may have seen this on my previous posts about CBT, Rachel gave me this link about aying NO to psychological treatments for ME, in a comment and i found it very useful: http://www.thegracecharityforme.org/documents.asp
November 7, 2008 at 11:29 am
ashysheela
see this also! http://niceguidelines.blogspot.com/2008/09/if-you-are-not-happy-about-cbt.html
November 7, 2008 at 7:38 pm
rachelcreative
Oh I could kiss your specialist! I was chortling out loud at him directly placing part of the blame for your deteriation on their forcing you to do CBT. I mean it’s not funny to be in that situation but it’s satisfying to have a specialist telling them they were wrong and they are out of order.
It’s confusing isn’t it that your specialist is very clear about what ME/CFS is and isn’t, about the theory of what causes it and about cell disfunction and muslce fatigue – YET is having to follow those ridiculous NICE guidelines with little to offer in terms of treatment just techniques for managing living with it.
A mixed bag. BUT pleased you have his clear and strong backing!
November 9, 2008 at 5:15 pm
DLA Tribunal « Ashy’s Blog
[…] the letter he wrote for the insurance company i was a bit disappointed with this one as it was less detailed and specific about what i can and […]
November 9, 2008 at 6:49 pm
ashysheela
I did have warm feelings toward him but i was not tempted to go quite that far! 😉 i did ring his receptionist and told her i was very happy with it – i don’t know if the message will be passed on…