Some comments under this article from someone talking about their insurance company that I tought could be of interest.
@Dolphin ?
Belen
Thank you so very much Nathalie for writing such a well researched piece. It is rare to see big newspapers publishing the truth about the injustices many of us have endured and continue to endure. This illness robs so many of us of so much. It has a devastating impact not only on those of us unfortunate enough to fall ill with it but also on those who care for us. Like someone else here said, I would very much like to see the PACE trial articles withdrawn from The Lancet. The fact that they have not yet been withdrawn speaks volumes as to the vested interests of all those involved in the publication of what has been proven to be seriously suspect findings. I, like many others suffering from ME, had to endure graded exercise therapy and CBT sessions as a condition imposed by my employer's insurers. This unfortunately led to a serious deterioration in my ME. It took me years to return to a manageable baseline. Exercise is about the worse thing anyone with ME should undertake, it only leads to serious relapses and severe and prolonged post-exertional malaise, yet that is precisely what a large majority of NHS doctors are told by the NICE guidelines to prescribe for their ME patients. This is not only untenable but also unforgivable given the latest research findings.
Belen
Here's an interesting fact I didn't mention in my earlier comment. My employer's insurers hired a physiotherapist who is a great advocate of graded exercise therapy (GET) as "a most appropriate treatment for ME" to provide this treatment for me. I was told in no uncertain terms that I was required to undergo GET. "Failure to do so would trigger a reconsideration of my cover" I was told by them. And of course, I was to be reassured by the fact that I was in the hands of an expert, a member of the very panel involved in writing the NICE guidelines on ME/CFS used by all the NHS professional in the UK. She was THE expert on this disease I was told. Now, if that isn't a conflict of interest I don't know what is!
This is how this disease is treated in the UK and in many other places. Still, I know I was fortunate in that the suggestion of "maybe she's depressed" only came up once and was thankfully quickly dismissed by a more experienced GP. I became ill 9 years ago. At the time, and after many years working extremely hard to earn 3 higher degrees (BSc, MSc, and PhD), I was finally working in my dream job as a senior consultant in the city of London, I had recently married the love of my life, and I was living my dream life. I loved my job, I had a beautiful home in Surrey and a busy social life. The notion that I would willingly leave my life as it was to spend my days alone as a prisoner in my own home was just too unfathomable.
For the most part I was taken seriously by my doctors from day one, and although I did have my fair share of ignorant physicians too, these were outnumbered by the good ones. Many other ME sufferers are not as lucky as I was, and instead spend years being dismissed by ill-informed medical professionals who rather than admit their ignorance persist on believing that because ME was covered in their Psychiatry Syllabus at medical school it must be a mental illness.
This disease robs people of the lives they were meant to live, it makes people prisoners in their own homes, it detrimentally affects every aspect of their existence. Our dreams, ambitions, and willingness to be functional members of society do not stop at illness onset. And that is perhaps the cruelest fact of all because day after day we are forced by our bodies to just watch life go on without us...
+10
2 days ago
Joan
Hi Belen, many thanks for sharing your experinces. Can you share with us what happened when you were coerced into GET? Or did you refuse? If so, what happened then? Bw Joan
+2
13 hours ago
Belen
Hi Joan, I had a permanent disability insurance policy through my employer's insurers. In spite of the multiple specialists who saw me and agreed I was suffering from ME, the insurance company insisted that I was to be thoroughly assessed by their physiotherapist. As I mentioned, she was regarded as an expert because she had been a member of the panel who had written the NICE guidelines on ME/CFS. At first I was quite reluctant to subject myself to further investigations given all the many other hoops I had had to jump through with my own employer's occupational health doctors. Every time I had one of those assessments I relapsed and had severe flare ups of ME symptoms. When I mentioned to the insurers' representatives that I did not see the point of undergoing further assessments, they made it clear that if I refused they would regard this as me 'being uncooperative' and would likely need to reconsider the extent of my cover. Given that my salary covered the majority of our mortgage at the time (even if by then I was only receiving 40% of what I had previously earned), I was not in a position to refuse. So I had all the additional assessments that were required of me. The physiotherapist talked to me on the phone, then came to our home and looked at my medical records, and of course came to the conclusion that I did indeed suffer from ME/CFS. I was then started on a very, very gentle GET programme. This entailed going for brief daily walks around the block at first, and cycling on a static bicycle for a couple of minutes at a time each day. This would be gradually increased after a few days, provided it could be sustained. Unfortunately, I managed this for about a week, but then relapsed severely, and had to take time off the GET altogether because I was so unwell (all my ME symptoms increased as a result, I experienced severe migraines, painful sore-throat and lymph nodes, muscle weakness and pain, extreme exhaustion, shortness of breath, dizziness, foggy brain, intolerance to sound and light and painful joints). We started again a few months later but the same thing happened again, this time just after a couple of sessions. Every time I relapsed due to GET it would take me months to recover and return to my "40% of normal function" baseline. 'Thankfully', my insurance cover ran out after 5 years so whilst I no longer had an income and was forced to emigrate (we could not afford to live in the UK on my husband's income alone), it meant that no-one could force me to undergo a treatment that was clearly extremely damaging. I have never recovered and still operate at 30-40% capacity but with careful pacing I can manage minimal exertion and some few brief outings. My days of having a high flying career as a senior consultant for a global firm, or of crossing the length of Spain on foot are just a distant memory. These days, if I manage to wash up the breakfast dishes then I have achieved something for the day. Excesses in energy used lead to relapses. I often regard these as being forced to borrow money from loan sharks. You know you can't afford it but what alternative do you have? You borrow because you need to and then "get seriously beaten up" by the ME because you should have never allowed yourself the extravagance of using what you know you cannot afford in the first place...
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