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.