United Kingdom: ME Association news

Kitty said:
Yep—although ironically, it may reduce the risks for them. Especially if the reason they're being excluded is because the service promotes exercise, and the therapists are concerned the advice they offer hasn't been assessed as suitable for everyone with high BMI.

All the same, being told you're too overweight for treatment is disturbing and smacks of discrimination. The type of pacing advice the service should be offering is appropriate for everyone.
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My guess would be you’d be asked to do the “cure-all” online healthy eating course to lose weight before you can be assessed.
I had to agree to do that for different reasons (pre-diabetic) it was utterly unsuitable for someone who can’t shop or cook. And the classic “just ignore the exercise bits”.

I doubt the BMI issue is related to them promoting exercise though. The higher the BMI the more they harass you to exercise. I wonder what the rationale is?

What next, no cancer screening unless you’re under a BMI of 35?
The MEA actually doing something useful here in highlighting the issue.
 
It is high time the MEAA and its members faced up to the fact that pushing for services that may be worse than useless is not in patients' interests. The article mentins that delayed diagnosis and treatment is asociated with poor outcome. Who knows what that means. But it is obvious that any 'treatment' that is considered unfit for obese people is not fit for purpose.

Charles seems constantly to support the idea of multidisciplinary therapy. I have no idea why but the MEA seems to want to be in the role of spearheading a new multidisciplinary service available to all. It is time they stood back and considered just how counterproductive this is.
 
Dolphin said:

BMI-Based Exclusion in ME/CFS Services: Progress Made, Concerns Remain​

meassociation.org.uk

BMI-Based Exclusion in ME/CFS Services: Progress Made, Concerns Remain - The ME Association

We recently raised concerns with two Trusts regarding referral criteria […]
meassociation.org.uk meassociation.org.uk

From X:
Healthcare bulletin - BMI-Based Exclusion in ME/CFS Services: Progress Made, Concerns Remain.
We recently raised concerns with two Trusts regarding referral criteria that excluded patients based on BMI. Following our correspondence with Mid and South Essex Community NHS Foundation Trust and Sussex Community NHS Foundation Trust,
we are pleased to report that these criteria are now under review.
However, concerns remain elsewhere.
Read full story here: meassociation.org.uk/g21q
#MECFS #MyalgicE #BMI
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Interesting to see the Sussex clinic mentioned here. I saw them for diagnosis (they later discharged me for being severe). I have a normal BMI yet the doctor recommended a 1000 kcal/day diet to me, which I thought sounded like a bad idea and not one that I have implemented.
 
CamTi said:
Interesting to see the Sussex clinic mentioned here. I saw them for diagnosis (they later discharged me for being severe). I have a normal BMI yet the doctor recommended a 1000 kcal/day diet to me, which I thought sounded like a bad idea and not one that I have implemented.
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That’s against NICE guidelines NG206.
It’s probably against NHS healthy eating guidelines.
It’s really disturbing.
Did they say why so low calorie?
 
CamTi said:
Interesting to see the Sussex clinic mentioned here. I saw them for diagnosis (they later discharged me for being severe). I have a normal BMI yet the doctor recommended a 1000 kcal/day diet to me, which I thought sounded like a bad idea and not one that I have implemented.
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Even on the programme for super morbidly obese people done by that Dr in Houston Texas that is shown on one of the reality TV channels he puts people who are 600 pounds and more on a 1200 calorie low carb high protein diet so 1000 for a normal BMI has to be totally unacceptable.
 
NelliePledge said:
Even on the programme for super morbidly obese people done by that Dr in Houston Texas that is shown on one of the reality TV channels he puts people who are 600 pounds and more on a 1200 calorie low carb high protein diet so 1000 for a normal BMI has to be totally unacceptable.
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It’s scarily low - and what the heck is the reasoning behind it?
 
Dolphin said:
As I recall, I have seen discussion of 8?? calorie diets like this for diabetes in the literature.
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That's a specific treatment approach, though, and it's based on evidence that it can reverse T2 diabetes. I don't know how extensive the evidence base is at this stage, but there is some. And there's a clear clinical aim, and it's supervised and time limited.

It's a fair way from telling someone to follow a super-low calorie diet without supervision, reasoning, evidence, or even common sense.
 
MrMagoo said:
That’s against NICE guidelines NG206.
It’s probably against NHS healthy eating guidelines.
It’s really disturbing.
Did they say why so low calorie?
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I should have made those arguments but at the time I was so shocked that I didn't. He mentioned some study on Long Covid patients following such a diet having shown promise. The recommendation didn't make it into the letter to my GP, but that did say that I should avoid weight gain. I am predominantly bed bound and wholly reliant on someone else to prepare my meals, so it all seemed to miss the point somewhat!
 
CamTi said:
I should have made those arguments but at the time I was so shocked that I didn't.
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No, it's not on you. Advice to drastically restrict calorie intake with no evidence-based clinical aim and in the absence of obesity is potentially harmful. Most people would react by being gobsmacked.

It's nearly as outlandish as a recommendation to dye your feet green, and it's probably more risky.
 
CamTi said:
I should have made those arguments but at the time I was so shocked that I didn't. He mentioned some study on Long Covid patients following such a diet having shown promise. The recommendation didn't make it into the letter to my GP, but that did say that I should avoid weight gain. I am predominantly bed bound and wholly reliant on someone else to prepare my meals, so it all seemed to miss the point somewhat!
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You were there to receive medical advice and I’m sorry you didn’t. You aren’t there to grade their performance or correct errors. I’m really glad you contributed your experience here though. Very worrying they are operating in this way.

The advice not making it into the GP letter just shows they know it wouldn’t stand up to scrutiny.
 
Kitty said:
No, it's not on you. Advice to drastically restrict calorie intake with no evidence-based clinical aim and in the absence of obesity is potentially harmful. Most people would react by being gobsmacked.

It's nearly as outlandish as a recommendation to dye your feet green, and it's probably more risky.
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At least green feet would have the benefit of being amusing!
 
BrightCandle said:
IIRC Mid and South Essex Community NHS Foundation Trust was the one that didn't have any service for severe patients at all, wont even refer them to its clinics for diagnosis.
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I have chased them for years. They were a 'spoke' to Peter White's 'hub' at Barts in 2005 ish.

In 2010 they 'divested' these services....
Under an innovation project driven by their Local Authority lead.
He left to drive the private sector in Health.....Eleros.
  • ELAROS (ELAROS 24/7): Professor Paul O'Brien was appointed CEO in April 2012.
 
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