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Exercise and CFS: Interview with Prof. Trudie Chalder

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Just nasty, and she keeps banging on about normalising sleep patterns. I am lucky to be one of those patients who sleeps normal hours, every night (although I have frequent brief awakenings) for the whole of my illness and I am moderately to severely affected. I also don't sleep in the day. I go to bed around 10pm every night and wake up around 8 am. I am not afraid of exercise - I long for it!
 

Aurator

Senior Member
Messages
625
The editor responsible for the present article, April Cashin-Garbutt, conducted a related interview two years ago, with a Dr Frederick Wolfe. On that occasion the topic was Fibromyalgia, but ME/CFS was also discussed.

Here are a few gems from that interview (most of the words are Wolfe's, not Garbutt's):

"The very wise and great Canadian historian Edward Shorter points out that the symptoms have to be legitimate in society."

"...the UK psychiatrist Simon Wesley (sic) who first described illnesses such as
chronic fatigue syndrome and fibromyalgia being at the end of a continuum of polysymptomatic distress."

"One problem that can arise from diagnosis is that people can gain disability benefits based on self-reported symptoms."


"How far do you think we are from finding a cure for fibromyalgia?"

"If this is part of something that happens with mankind then maybe there won’t be such a thing as a cure. There are people who are anxious, people who worry a lot, there are some people whose personalities tend to be more down and depressive and others that tend to be happier. It is the nature of mankind to be that way. The idea that they all have to be cured is a bad idea. We should not medicalise normal aspects of their lives."

 

rosamary

Senior Member
Messages
131
"...the UK psychiatrist Simon Wesley (sic)

What I thought was you said was 'sick 'not 'sic'.

But I've put my spectacles on now and will concentrate.

Trudy? Well...it's comforting to know people are really doing there best to help. (We can't all be intellectually unchallenged).
 

Purple

Bundle of purpliness
Messages
489
"One problem that can arise from diagnosis is that people can gain disability benefits based on self-reported symptoms."

The UK state benefits system functions mostly on a means-tested benefits basis whereby financial need for benefits is assessed by strict rules - and the only disability benefits that are not means-tested at the moment are Disability Living Allowance (DLA) (being replaced by PIP now) and Employment and Support Allowance (ESA) Support Group. Which means that many people with ME (especially those who are not severely ill but too ill to do any work) and who have partners in work or their own savings/means to support themselves - so don't qualify for means-tested benefits - get ZERO POUNDS STERLING in benefits (disability/sickness and other benefits) - and there is not even automatic relief for the sick/disabled on things like dental care or medication prescriptions.

If someone has a working partner and gets assessed for ESA and considered to be able to prepare for work some time in the future and is placed in the work related activity group (WRAG) of ESA, they will get 12 months of very low payments (not even minimum wage equivalent). After the 12 months, they get nothing - possibly for decades. (though at least these years are counted towards qualifying for the state pension)

If that person is e.g. housebound but able to look after themselves and cook a meal for themselves, they will not qualify for the DLA/PIP care component. So they will get nothing in this disability benefit.

If that person is able to walk short distances - more than the threshold for DLA/PIP mobility (which I think is about 50 meters) - they will not qualify for DLA/PIP mobility component. So they will get nothing in this disability benefit.

The argument that people 'are in it for benefits' doesn't hold water for many PWME who have working partners - in fact, if their partner doesn't earn much, those families could be worse off financially than as if they were entitled to means-tested benefits. And usually significantly worse off financially than if they were able to work.

It would be interesting to know what percentage of PWME get ZERO in disability and other benefits in the UK and yet are too sick to do any work. I suspect the number is not negligible.
 
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SDSue

Southeast
Messages
1,066
Well, she's an idiot, so…….

What's sad is that these idiots will get to claim "new research" when they can't hide from the truth any longer. And they'll also claim to have had a keen interest in ME/CFS for years. Most will suffer no loss of reputation, except amongst patient groups.
 

redviper

Senior Member
Messages
145
As far as I'm concerned, all options should be on the table for stopping individuals from Trudie Chadler from spewing this ignorant rhetoric. These types of comments are costing patients their lives and endless amounts of suffering, I'm wondering if her hands are actually dripping with the blood of the innocent as she writes this garbage.

I'm not sure what's going on over there in the UK, but the amount of garbage propaganda coming out of that country regarding ME/CFS would make Hitler, Joesph Gobbels and the rest of the Nazi's proud.