When I first started getting ME symptoms I played more sport to try and ward it off, I ran myself into the ground! 8 years latter I still haven't learnt, I went to university in 2015 as advised by doctors who told me that I would be completely fine. But aged 23 I am back where I was when I was 15, all that hard work of resting and pacing has gone to waste. Doctors give advice that is harmful. It is crazy to think that if you have ME you are better off not seeking medical advice for it, or finding a doctor who is clever enough to know not follow the rules.
The problem with ME treatment is that it is never followed up, I have been told by countless doctors to just push on through. But by the time my health has deteriorated due to following their advice I have been discharged, (or I have moved on because no one wants to go back to a doctor who has made them ill!)
The payback that ME patients get after exertion is rarely instant, often I will get payback the next day or a few days after and it can be difficult to join the dots between the two. When I went to university I was doing slightly too much every day over a long period of time, this began to catch up with me after a few months but I didn't really relapse until a year and a half in! The doctors who I saw during university no longer see me because now I have left, and the ones who I saw beforehand were from an ME clinic who discharged me because they were only allowed to see me for about 5 weeks. My GP has stopped suggesting that I exercise.
The problem with ME treatment is that it is never followed up, I have been told by countless doctors to just push on through. But by the time my health has deteriorated due to following their advice I have been discharged, (or I have moved on because no one wants to go back to a doctor who has made them ill!)
The payback that ME patients get after exertion is rarely instant, often I will get payback the next day or a few days after and it can be difficult to join the dots between the two. When I went to university I was doing slightly too much every day over a long period of time, this began to catch up with me after a few months but I didn't really relapse until a year and a half in! The doctors who I saw during university no longer see me because now I have left, and the ones who I saw beforehand were from an ME clinic who discharged me because they were only allowed to see me for about 5 weeks. My GP has stopped suggesting that I exercise.
What I want to know is, is there any mechanism for doctors to report back to NICE* that their techniques don't work? All around the country there are isolated GPs who have learnt from experience that the NICE guidelines don't work for ME. Once I even saw an ME specialist who told me to rest, rest, rest. Until the official guidelines for doctors change, the overall approach will remain the same and patients will continue to get more ill after medical advice instead of better.
*NICE guidelines are used by all GPs to advise them on the correct treatment for their patients.
Yesterday the Daily Telegraph published an article with the title "Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise". (I won't link it here because I don't want it to get more views.) It was reporting on an article in the Lancet which said that GET (graded exercise therapy) and CBT (cognitive behavioural therapy) can improve ME. The NHS Choice twitter account then posted this tweet (see below), indicating that they support this type of journalism. I have include the response from two fellow ME sufferers, to show the scale of harm that can be caused by this attitude.
Yesterday the Daily Telegraph published an article with the title "Chronic Fatigue Syndrome sufferers 'can overcome symptoms of ME with positive thinking and exercise". (I won't link it here because I don't want it to get more views.) It was reporting on an article in the Lancet which said that GET (graded exercise therapy) and CBT (cognitive behavioural therapy) can improve ME. The NHS Choice twitter account then posted this tweet (see below), indicating that they support this type of journalism. I have include the response from two fellow ME sufferers, to show the scale of harm that can be caused by this attitude.
It is a shame that serious biomedical research dose not get the same media attention as the psychological approach. This is probably because it is not supported by the NHS. There is a lot of exciting research going on now, and it is beginning to gain interest form the scientific community. Most notably the drug Rituximab has been shown to be effective in 64% of patients. But there has not been a media storm about it, and the government are showing no signs of funding research into it.
By definition exercise exacerbates ME. NICE themselves describe ME by saying "exercising or concentrating on something makes your symptoms worse" see here. Yet they still recommend graded exercise therapy as a treatment here. Something doesn't add up!
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