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:

 

It's not something that many of us want to bring up for a multitude of reasons but it is important, particularly if the advice is coming from one source only. I also don't know whether Luscombe did the section on enteral feeding, or if that was by a physician.

I'm posting today because MEA facebook has this topic today, under the guise of a question about 'restrictive diets'.

It is a bit naughty really because the questions says 'is there any evidence' - and we all know that for ME using that term when there is no funding that has allowed for any evidence means that even if it was a different topic where the answer was pretty obvious there still wouldn't be 'evidence'.

(9) ME Association - Medical Matters - Restrictive Diets Dr Charles... | Facebook

and points to the following page: Diet and Nutrition: Restrictive Diets - The ME Association

My gut feeling reading through this is that there are questions to be asked about whether times do need to move on a bit from exactly what is said. Unsurprisingly it feels more from an approach of a dietician behaviourally observing 'the patterns' than someone who understands ME/CFS and the limitations on activity and so on - and being sure they have properly factored that in.

And yes it is a question that has to be asked, because it is turning out to be incredibly important.

Terms like self-restrictive are divisive if it is actually describing, like when the BACME document used the term 'self-neglect' (for eg I assume when people couldn't shower), something that is about symptoms due to severe ME/CFS. I can easily see that if someone is in PEM and severe then waiting a few hours until they have enough energy to eat and digest makes sense in a very basic example. We've seen examples in hospital where disbelief is a problem but there are other causes.

Maybe there are some examples on way, but there are examples the other way. And evidence isn't present for either but that seems to be forgotten and OKayed in one direction without responsibility being taken for the impact that would cause to suggest the term 'disordered eating' as if it is wrong and 'a disorder' when it might be describing how ME/CFS affects all activities so why is it a 'disorder' and 'self-' suddenly when it also affects sleep and walking and showering.

To pair it with the term 'good variety is encouraged' is problematic without evidence that it is possible, it again infers there is a behavioural or choice element that isn't proven in all the circumstances it might be being used for.

I understand that this is being posed as an answer to a specific question (apparently) but I'm not sure it isn't from a more generic sheet. In which case again there needs to be responsibility if suggesting 10% weight loss --> because that might be an x, y, z could be behind it situation, so only mentioning 'x' is as we all know going to close people's ears to y and z. And yes other causes do also need to be noted otherwise things can often be that simplistically implemented.

I'm also concerned that there is no description showing understanding of the level of debility involved with severe or very severe ME/CFS, which is highly relevant. Is she assuming that people should be able to feed themselves at non-disordered timings with a good variety, because if not then there should be explicit note about how they would need someone to provide it, rather than 'self-' which she should be well-aware has insinuations.

On that basis is the elderly lady in hospital who has her food out of reach and no help to eat it, or who is without a carer and can no longer cook and shop, have disordered eating or self-neglect?

 

I think the following phrase from her quote needs to be probed too:

"In my experience, disordered eating and restrictive food choice is not uncommon, especially in those with ME/CFS who are severely affected."

She must be aware of the sample that she would have seen meaning that she should have phrased this more accurately.

As a dietician she isn't going to see most people with ME/CFS, and she is not making this clear at all.

Her experience is that perhaps some people who had disordered eating or restrictive food 'choice' (another divisive term) came to her who had ME/CFS. How many? And did she or was she in a position to rule out, or note here, other factors?

So yes there is potentially a behavioural presumption issue going on, in not seeing the fallacy or gaps in what she is stating. Just like someone might unkindly say 'disordered activity' or 'exercise choice' and would be wrong and bordering on disability bigotry where it is due to a condition that means exertion can cause harm and PEM might claim their words are apparently 'accurate' but know full well those reading it in the context will be taking their words as they are read.

I think this can and should do better given the implications of all this.

 

This is interesting because another question to ask is just how limited is the input as a whole on anything to do with ME/CFS in this area? I say this because I happened to come across the following: Myalgic Encephalomyelitis (or Encephalopathy) / Chronic Fatigue Syndrome (ME/CFS) - British Dietetic Association (BDA)

It is the same names coming up again and again, which seems unusual to an extent you just would not find in any other condition.

The three dieticians listed here are: Sue Luscombe (again) , Amy Pratt and Jennifer McIntosh

Amy and Jennifer both work in the same place and seem to primarily have experience only from working in the Leeds trust that runs the inpatient centre that runs as a psychiatric unit under a mental health trust, and treats not ME/CFS but all the FNDy persistent symptom type bucket terminologies. The job ads for these positions note that the person needs expereince or want to work in mental health (even from mid 2023) which one could justify as being because it happens to be based under the mental health trust, but I think there are strong hints it goes further than this.

McIntosh was on the Nice guideline committee.

So if this is the main pool from which most things on ME/CFS advice is getting drawn then the experience across these three is very narrow and very skewed ?

And I'm guessing but getting a sense they are unaware of how niche a sample their experience will represent, and won't even 'all' be ME/CFS - and how much do they even listen to those to learn (given so many years of being in a mental health paradigm being convinced of some lack of insight / paternalism) even from that.

Particularly when you look at the BDA article and note they at least correctly define the illness as per the new guidelines but need to imagine what a huge 'break' there is between this new definition that is accurate to a debilitating illness with physical symptoms, and potentially an old approach based on assumptions that are rather mental health based and paradigmed.

Terms like 'disordered' seem to trot off quite easily as if they are OK as cover-alls which allow huge ambiguity, when these are the very things at the root of the issues when read by someone who has an option for one interpretation of sending someone off to another dept 'who will deal with them' vs either missing guidance that appropriately understands and therefore communicates the symptom issues and debilitation leading to limitations (which they then call 'disordered' when it is actually very ill person trying to do their best for example), or missing detail. I find it pretty interesting that needing help to prepare things, and eating when able are never mentioned in these things. But if you for example looked even at old school stuff about bad flu would be basic.

EDIT: for example I think Bateman-Horne have good advice and sheets for things like prepping for crash days that cover this type of issue.

It feels chosen that there is always this gap in the things I'm reading, but never missing the term 'disordered' and inferences of behavioural or 'restrictive' which is just as superfluous to their remit if they want to use that narrow definition as explanation?

Just think how dangerous that combination is to someone who perhaps is severe and left vulnerable in a home with a partner or parents who take only the words and inferences on paper literally.

I am not 'reading into this' to see it suggests eg to a husband that rather than needing to be looked after and brought food they could eat when very ill, at times when they are able to (I'd suspect the skipping over the idea of crashes meaning people will only be awake and well at certain times might mean the behavioural 'hypersomnia' stuff could also be a belief-issue) they should watch carefully if they 'seem to be disordered' or say a certain food is causing them issues because 'all these things are not uncommon' apparently.

The result is that you have someone who even if they were able to and awake to eat at a certain time is then left to get it themselves and is then exhausted by the time they need to eat it. But are being watched 'in case they seem abnormal' when they do so? Which would cause psychological intimidation to anyone too. And energy-consuming conversations and arguments?

If /where these issues really are a concern when people are being supported properly, then why isn't 'the proper support' and understanding of the codnition and its impacts being underlined to be provided first before 'suggesting to watch out for x, y, z'? Given the former is part of the condition to watch out for (people being too exhausted) whilst the latter is just a different condition that they are effectively suggesting ? Do they actually realise this?

 

Sorry @bobbler , my brain isn't able to follow all of these posts fully, but I can see you've made good points.

I just wanted to point out that in the documents written by Luscombe herself (I linked to them above), the restrictive diets she mentions are ketogenic and anti-candida (no evidence). In a section explaining how low-FODMAP can be helpful for certain people, she also cautions that it is restrictive. I think those are fair.

I have to be on a low-FODMAP diet and have had limited success with reintroducing foods, and it's restrictive. It would be even more restrictive if I hadn't been able to find recipes and the Monash app myself and if my carers hadn't been able to do what they did. And that's on top of other restrictions - a small proportion of which certainly need retrialling to see if I could get back on more foods. I've retrialled a bunch of foods recently that I came off because they were irritating my bladder, and it looks like I'm now able to tolerate a little bit of tomato, but no citrus and still the same limitation on chocolate. All of those attempted reintroductions are time- and energy-consuming for me and for my carers. When things are bad for me or for them, they're not possible. I'm going to try more FODMAP reintroductions soon, treading carefully, as I have discovered that they really affect my cognition.

But when my digestive system suddenly went completely awry a couple of years ago and I couldn't eat nearly enough, and lost a frightening amount of weight, it had nothing to do with restrictions. I certainly needed the tiny amount of food I could eat to be drawn from the things I could tolerate, and that could have, theoretically, given a dietitian cause for concern. With a drug and time, I was able to increase my intake to normal amounts, but continued to lose weight. So I worked with a dietitian by email to put that weight back on. If the drug and time had not worked, I would have needed enteral feeding, and my guess is it would have had to start below my stomach.

It is vital that dietitians listen to the reasons why a person is or is not able to eat X, Y or Z. It is also important that people with more severe ME/CFS, myself included, are not on a more restricted diet than they need to be.