Discussion in 'General ME/CFS news' started by Andy, Feb 21, 2019.
Blog by Nina Muirhead
So weird that physicians unfortunate enough to develop the disease seem to come to the conclusion that the dominant paradigm is completely wrong and that the original understanding, the one erased by the psychosocial ideological model, was pretty much as good as it gets until we find the root cause.
I'm sure it's just a coincidence, mass hysteria, cats and dogs marrying, the whole lot.
"I was never taught about ME/CFS at medical school and it certainly wasn’t in the MRCS examinations that I passed a decade ago. I had a vague notion that it was an illness related to deconditioning, but I was wrong. ME/CFS is a serious neurological condition which can be fatal."
Who is responsible for that?
Exactly - "kept working and exercising", trying to continue leading a normal busy life, and worsened despite exercise - so NOT DECONDITIONING then!
"Given that my own prior understanding of ME/CFS was so misguided".
I think she is just stating, honestly, what I myself have said in the past: That ME, unfortunately, is much easier to misunderstand than to understand, and until something forces to you to gain further insight, you will probably get it wrong.
I don't like laundry lists of ME/CFS "typical symptoms". Not everyone with ME/CFS has even half of the 20 symptoms listed. I have 7... maybe 8.
Off topic (mostly).
After reading the link in the OP I poked around on the same site and came across this link, dated 10th November 2016 :
Title : A common law right to autonomy of treatment
My attention was caught by the phrase "An adult person of sound mind is entitled to decide which, if any, of the available forms of treatment to undergo".
It suddenly occurred to me to wonder for the first time if people with ME, people with MUS, people with depression and/or anxiety, anyone classified as a hypochondriac, an attention-seeker, a drug-seeker, or anyone referred to IAPT are considered to be "of sound mind"? And who decides?
That is the get-out-of-jail-free card for them.
Just classify uncooperative patients as being of unsound mind, and it all becomes so much easier for doctors and policy makers.
It could happen to them too. They are not immune. And when they start speaking out of their own experience, there is a higher likelihood that their peers will listen. Sad but true.
Hopefully your right, but not sure that even peers experiences will make them understand that this could happen to everyone (them included). People in general are probably thinking this could not happen to me, a hundred times that when it comes to doctors. But do think that surgeons and other doctors can imagine their kids and relatives being ill with this disease. And maybe they also pick up the point that if so, they themself are in for a hard time, fighting for help, knowledge, understanding and maybe also not appreciating the stigma that will come with it. At least one could hope that a peer describing have more impact than an ordinary man or woman doing the same.
Unfortunately I have every one of them plus a few more. Back when I used to go to doctors before I gave up, I narrowed it down to the most pertinent few rather than hit them with my own personal laundry list. But never mind, most/nearly all doctors think it's just 'fatigue' or 'tiredness', no matter what you tell them!
Absolutely. Nobody thinks this could ever happen to them - until it does. I wouldn't wish this disease on anyone but I think it's sadly true that if doctors or their loved ones or peers were to acquire it and realise first-hand that not only is it not 'tiredness' but also that CBT/GET is as much use to a person with ME as a bicycle is to a fish, they would then grasp just how dire things have been for the three decades since a small group of UK psychs were allowed to hijack and reframe the illness as 'fatigue'. Being able to grasp this should't require such an extreme measure as getting it oneself, but sadly that's sometimes the way.
I think this is where the mental capacity act should come into play. It sets clear boundaries about when a person can and cannot be assumed to lack the ability to make decisions about their health. Here is a summary from the NHS website (my bolding);
I'm no expert but I don't think PWME or any of the other patient groups you mention can be said to lack capacity in the definition above but in my experience that doesn't stop medical professionals treating us like patients do when we don't agree with them; My GP for example, saw my history of mental health issues when I first fell ill and sent me to a psychiatrist under false pretences after I categorically stated that my mental health issues had been under control for over 10 years and that I didn't think it the new symptoms were related.
I had that message and immediately tried again, and it appeared normally.
Yes, I got that too. So I copied and pasted the URL and it worked. Weird!
And of course not wanting the treatment is a sign of not being of sound mind.
They may be considered not to be of sound mind by some, but legally there needs to be a process of incapacitation. Unless somebody is lawfully incapacitated he is deemed legally competent, i.e. "of sound mind".
The UN says nobody, if sick, disabled, psychologically ill or whatever (altogether: not "of sound mind" from a legal perspective ), must be discriminated, and to take away the right of autonomy is not only discrimination.
And if politicians had ME for just one day, the very next day millions of dollars in ME research funding would start flowing.
And I do wish it upon them.
I disagree, not because I'm 'nice' or because of any ethical/moral concern, but because it takes a few years to fully grasp what ME is, for the 'hope' that things will pass and return to close to 'normal' to be shattered. For them to realise that whilst their lives may be 'over' they will have to live on and witness it. And other things to that effect, anyone whose suffered from ME for a 'while' will know what i'm talking about
It doesn't say much for all these surgeons. After all, within a year of moving into the field Wessely published saying that it was time for a new approach. And within a further year was publishing the treatment protocol. What are the chances of that? It must all be very obvious for those with the power to see.
Only be being totally immersed in the ME 'experience' for a long while, would they get that deeper 'appreciation' of life with ME.
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