The Canary: The two leading UK ME/CFS charities are linked to an organisation fomenting the psychologisation of the illness, 2024, Hannah Sharland

@Evergreen wrote:

'Regarding the bit on Luscombe - a dietitian:

Quote from the Canary article:
"Tellingly, the company [Vitality360]’s core focus is on ‘rehabilitation’ – or in other words, getting people living with chronic conditions back to work."

Huh?'

...........................................



Vitality360 Specialist Advisor:
Sue Luscombe
Associate Specialist Dietitian and Nutrition Consultant

https://www.vitality360.co.uk/our-team



Vitality360:
'We offer personalised, practical and realistic rehabilitation programmes for individuals, employers, insurance companies and case managers, from our specialist team.'

'The Vitality360 approach to recovery involves looking at all aspects of your life and then drawing on a range of different clinically evidenced interventions to help you to manage your symptoms and activity levels including sustaining work.'


Vitality360:
*'Have you had to stop doing the things that you used to enjoy?
*Can you barely think straight?
*Are you having trouble sustaining work?
*Are you struggling with persistent pain?
*Are you debilitated by constant tiredness and fatigue?
*… does this sound like you, your employee or client?'
https://www.vitality360.co.uk/



Vitality360 Testimonial of Recovery from 'CFS/ME':

"I got struck down by the juggernaut that is CFS/ME. This condition is absolutely devastating and my heart goes out to all those who have been unlucky enough to be affected by it. BUT the main message I want to convey, from my lived experience, is that you CAN get better"
https://www.vitality360.co.uk/




So, what is the difference between Vitality360 using testimonials to advertise and sell their rehabilitation program as a 'cure' for ME/CFS (which they call CFS/ME), and other scam cure programs such as Lightning and Gupta etc using testimonials to sell their scam 'cure' programs?

.

 

I could not see the actual bit about disorders eating in your quote. I’m not sure, given how little the BACME/NHS services try to engage with ;/ help the most sick at all, they can make statements regarding many people eating in a disordered way.

 

It is the "When to suspect an eating disorder" part - I had to truncate because the nutrition section is long and you can't quote more than 10% of a document because of copyright. I've added...to that part of my post to clarify that.

The nutrition section starts on p.23. The subsection "Supporting those with poor nutritional intake" starts on p.24 and the enteral feeding subsubsection is on that page. The disordered eating subsubsection is on p.26:
https://bacme.info/wp-content/uploads/2023/11/BACME-Severely-Affected-Shared-Practice-Guide.pdf

It would be good to have actual studies rather than relying on clinical impressions alone. Such studies would be tricky as patients are scattered across the country, but if someone's determined enough, they could be done.

 

No difference, just as dodgy.

To me, Vitality 360 sounds like a professional version of the Optimum Health Clinic. Less dodgy in some ways – you get professionals who are actually qualified to work with sick people - and as dodgy or more dodgy in others. Most of Vitality 360’s testimonials are from people with “Post Covid Syndrome”.

I would far rather people with ME/CFS, long COVID etc have access to a dietitian than to a nutritionist. My experience with a nutritionist was a lot of expensive, completely evidence-free nonsense, with side effects, delivered by a very nice person. I remember someone with very severe ME had been recommended by a nutritionist to chew raw carrots. I cannot think of a more energy-stealing thing to tell someone with very severe ME to eat. The BACME document, by contrast, with input from Luscombe, suggests:

In my view there are plenty of issues with Vitality360 and BACME. But the Canary piece is about attacking the MEA and AfME.

In order to tie the MEA to the abuse of Carla and Millie, Sharland points out that Luscombe is a dietitian who works for/provides advice to the MEA, Vitality360 and BACME.

The evidence Sharland puts forth for Vitality360 being shady has nothing to do with Luscombe, and she reaches the unjustifiable conclusion that:

Like I said before, dietitians have nothing to do with rehabilitation as defined by Sharland in her Canary article:

As others have said, there are problems with BACME, but the evidence Sharland puts forth about the BACME document is completely misleading. She speculates:

Who would Sharland speculate wrote the section on “Enteral Feeding”? Or the section on using the MUST tool to identify when someone is at risk of malnutrition? Could Luscombe have written them? Before stringing her up, could she be...asked?

Sharland also quotes Luscombe from an ME Essential Q&A. The question was:

Someone (Dr Shepherd?) wrote a response, the main thrust of which is

At the end of the response, they (Dr Shepherd?) wrote:

And then quoted Luscombe. Luscombe was asked about restrictive diets, and she answered about restrictive diets. It would be weird to bring up enteral feeding in response to a question about restrictive diets.

If Luscombe has a case to answer, then Sharland has not provided evidence for it.

I would suspect that Luscombe is the only, or one of the only, dietitians with a special interest in ME/CFS, and that’s why she works for MEA, Vitality360 and BACME. We have no idea whether Luscombe agrees with every single thing every one of her colleagues and every member of management in all of these institutions does and says. We also have no idea what she would recommend for Carla or Millie. Based on the BACME document, she'd be advocating enteral feeding if they were unable to get adequate nutrition orally.

There is much better information on what Luscombe may or may not think and whether the MEA could be accused of being complicit with the abuse of Carla and Millie from the documents they have written, all freely available on the MEA site, for example:

Here's Luscombe's Food Fact Sheet: ME/CFS and Diet
https://meassociation.org.uk/wp-content/uploads/BDA-Food-Fact-Sheet-ME-CFS.pdf

The MEA document on diet and nutrition is here. Luscombe wrote some of it, Charles Shepherd wrote the malnutrition section:
https://meassociation.org.uk/wp-content/uploads/DIET-AND-NUTRITION-APRIL-2024.pdf

Here's the bit relevant to cases like Carla and Millie:

And here's Dr Shepherd's document just on malnutrition:
https://meassociation.org.uk/wp-con...L-ASSESSMENT-AND-MALNUTRITION-AUGUST-2020.pdf

Sharland tries to argue that the MEA is complicit in the abuse of or inappropriate treatment of Carla and Millie via association with Luscombe. I don't think the evidence supports her argument.

Edited to change this bit, as other definitions of rehabilitation, which cover all aspects of multidisciplinary care whether supportive or more along the lines of GET/CBT, would include dietetic input. Changes in bold:
Like I said before, dietitians have nothing to do with rehabilitation as defined by Sharland in her Canary article: