It's one thing to be told you have a disease that is not yet fully understood, while doctors do their best to seek out treatments. It is quite another thing to be told your life-altering illness is only a self-inflicted burn-out, and that you just need to take more exercise and think more positively. I joke not. Many patients report this type of attitude from their medical professionals.
The problem is this: NICE guidelines recommend Graded Exercise Therapy & Cognitive Behaviour Therapy as the best available treatments for "CFS/ME".
Some doctors interpret such advice as: "Get a move on!" and "Stop dwelling on things!"
Do these doctors not realise that ME can be serious? Indeed, so serious that it can render the sufferer helpless and in a an enduring state of physical misery?
Do these doctors not recognise that exertion can make the health of fragile patients plummet?
Do they not notice?
If not, why not?
The ME community has been saying for years that exertion harms their health - sometimes permanently. Yet still the NICE recommendation for exercise remains.
And the newly ill are still given advice that could cause them long term disability.
And time goes on and NICE guidelines are still not changed.
We are told the guidelines will be looked at in 2017 to see if they need to be reviewed, but there appears to be no urgency to this process.
We also have no reassurance that the experts being consulted on the decision are cognisant of the harms of exercise for ME. Are these reviewers taking new research seriously? Are they prepared to ditch evidence from trials that fail to stand up to scientific scrutiny?
And if so, why are changes happening so slowly?
Now, here we are in the month of May again. Still trying to "raise awareness", still blogging, still protesting, and still campaigning.
Yet little has changed for patients in consulting rooms across the country.
Why is that? Why? Just Why?
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PS I read somewhere recently: If you want to change a person's established view point, that reasoned arguments and referenced literature have less effect than simple questions. So I have chosen not to expand this post with detail, but simply to ask the question "Why?".
My post for ME Awareness Day 2017 & #May12BlogBomb
Other posts can be viewed on the Link List for #May12BlogBomb 2017
