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

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bobbler

Senior Member (Voting Rights)
Link to article: BACME: ME/CFS charities work with psychologising organisation (thecanary.co)


I've picked out the following as the intro, but worth a read on the BACME discussion etc and other things (it isn't just about the charities). It also picks out some interesting overlaps and interactions across different organisations.


"Two of the biggest myalgic encephalomyelitis (ME) charities in the UK may be a little too cosy with a controversial organisation pulling the strings behind the clinical care for patients living with the devastating chronic illness. Action for ME and the ME Association’s close connections to it raise serious concerns over their integrity as charities proclaiming to advocate for people living with ME.

Together, the pair are sitting on over £4.7m in funds.

So as multiple reports of hospitals horrifically abusing women living with severe ME have hit the headlines, it’d be fair to ask where the hell they’ve been and why they haven’t stepped up. Crucially then, this could have something to do with their links to the British Association of Clinicians in ME/CFS (BACME) – linked to the psychologising medical establishment."


"BACME: brainchild of the “biopsychosocial” lobby
The British Association of Clinicians in ME/CFS (BACME) proclaims that it is a:

multidisciplinary organisation for UK professionals who are involved in the delivery of clinically effective services for patients with ME/CFS.

Essentially, it exists to underpin ME clinics and their clinicians operating across the UK. In January 2021, it registered as a charity. Currently, the non-profit has around 200 professional members who pay yearly fees [Pdf, p8]. It regularly hosts webinars and conferences for these members to network and exchange knowledge.

BACME boasts that its charitable objective is the “relief of sickness for the public benefit”."
 
It would be easy to miss in this article that both AfME and the MEA oppose CBT and GET, contributed to the 2021 NICE guidelines and have worked to help those being abused by the medical system.and . AME in particular played a big role in setting up the DoHSC review that has changed minds at that department and hopefully will lead to a new action plan, and the MEA and AfME both played a major part in that review.

I'm shocked. The article tries to make a great deal of not a lot through mostly tenuous connections. I don't think the MEA and AfME deserve this kind of attack.

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“Action for ME and the ME Association close connections with raise a serious concerns over their integrity as charity proclaiming to advocate for people with ME.”
They haven’t shown any close connections to BACME. And the claim is ridiculous.

I know that Forward with ME having engaged with the organisation, but given BACME clinics deliver almost all NHS diagnosis and treatment in the UK, I’d be shocked if FwME didn’t try to engage with such a significant organisation.

As for attacking the promotion by the ME Association and Action for ME of the Isle of Wight service for ME, I understand that someone with ME played a central role in setting up the service, making sure it was patient focused. This is exactly what we should be trying to do. At least at one point, the ME Association employed this person to help do the same with other service. this is something to laud, not some kind of shocking example.

I do wonder how much research went into this article.
 
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There is also the problem that doctors treating pwME are unlikely to take notice of 'ME organisations'. And any help by medical advisors to ME organisations for individuals of necessity has to be confidential.

I have criticised AfME for its close ties with BACME, specifically Gladwell and the Bristol clinic, resulting in some inappropriate materials being produced. And we have recently criticised the MEA for the current Tyson/Gladwell project. But I agree it's not a fair characterisation of both patient organisations that do a lot of good work too.

I think the article would have been better if it focused its ire on BACME which has been and in some respects continues to be unscientific and unhelpful in its publications and meetings. There's a meeting coming up soon with some dubious speakers and no access for patients to review the talks. I hadn't noticed the problematic bit in the BACME severe ME guide about patients choosing to eat disordered diets.
 
Trish said:
We don't know yet what that review will say, and whether it will have any effect.
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I think we’ve got a pretty good idea of what it will say, based on what’s come out so far. Whether it impacts on people with ME, we obviously don’t know yet. What is clear is that it had a big impact on the department of health and social care. A large number of people with ME have put an enormous amount of energy into this, and have been welcomed into the process.

I still think it’s a very significant thing, not something we should dismiss at this point.
 
Not a fan of this scattergun hit piece.

Regarding the bit on Luscombe - a dietitian:
Tellingly, the company [Vitality360]’s core focus is on ‘rehabilitation’ – or in other words, getting people living with chronic conditions back to work.
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Huh?
Taken together in this context, it suggests Luscombe has also jumped on the biopsychosocial bandwagon to monetise pushing sick people into work.
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A dietitian has absolutely nothing to do with whether or not somebody is fit to work. They couldn't influence such a decision if they tried.

This is what Sharland says about the BACME document on severe ME/CFS (full document here: https://bacme.info/wp-content/uploads/2023/11/BACME-Severely-Affected-Shared-Practice-Guide.pdf):
However, the particular part of concern where Luscombe likely input, revolves around a section titled “Disordered Eating”. Ostensibly, this advocates for “psychological intervention” and implies that a severe ME patient’s inability to eat is potentially attributable to an eating disorder.
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Pages 23-27 of the document deal with nutrition. The quote above appears on p.26. This is what the document actually says :
Supporting those with poor nutritional intake

First line: Use Food First
With a MUST score of 2 or more (check your local policy as this may vary) refer to a dietitian for assessment to give tailor-made advice such as modifying texture and fortifying foods. In some circumstances this fails to give an adequate intake, nutritional supplements may be prescribed.

Enteral Feeding
Despite trying all these approaches the patient may still continue to lose weight to a level that poses serious risk to the person’s overall health. Enteral feeding may need to be considered in such situations, i.e. feeding via a nasogastric (NG) tube, nasojejunal (NJ) tube or PEG (percutaneous endoscopic gastrostomy). This needs the assessment and intervention from a specialist team involving doctors and a specialist dietitian in nutritional support.

Considerations for enteral feeding:
1.Swallowing difficulties affecting oral intake substantially
2.If oral intake is absent or likely to be absent for a prolonged period
3.If the patient is unable to meet nutritional requirements adequately via oral food and nutritional supplementation therefore at risk of severe weight loss.
4.Early instigation of enteral feeding may be needed in severely malnourished patients.

Risk of Refeeding Syndrome
[A whole section on this very important risk.]

...
When to suspect an eating disorder?
Though not diagnostic, a score of two or more from the questions below ( SCOFF
questionnaire) should raise your index of suspicion.

1.Do you ever make yourself sick because you feel uncomfortably full?
2.Do you worry you have lost control over how much you eat?
3.Have you lost more than 1 stone in a 3 month period?
4.Do you believe yourself to be fat when others say you are too thin?
5.Would you say that food dominates your life?

If there is concern about an eating disorder referral to an Eating Disorder team is advised.

Medical Emergencies in eating disorders (MEED) is a document drawn up by Royal College Psychiatrists and is endorsed by the Academy of Medical Royal Colleges (replaces MARSIPAN). It has guidance for primary care and secondary medical care clinicians in assessing and managing disordered eating/eating disorder where there is serious risk to health.

It is equally important to identify when there are no emotional or behavioural issues related to eating to ensure people are not misdiagnosed as this can lead to harm. [my bold]

Weight Gain
[Little section on weight gain – this is the last section before a list of resources.]
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I think it is very clear from the order of the sections and the sentence I bolded that whoever wrote the nutrition part of this BACME document is for enteral feeding where indicated and against misdiagnosing people with an eating disorder. I think it is reasonable that eating disorder is considered and outruled. It's entirely possible that some with ME/CFS have eating disorders - we are humans. I don't think it being included towards the end of the nutrition chapter of this document is why people are mistreated in hospitals. If health professionals were being guided by this, they'd be going for enteral feeding a lot more.

Edited to change "hitpiece" to "hit piece".
 
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I dont think this is ok. I'm not happy about it at all. I cant speak about AfME because i know little about them. So my comments are manily about the MEA.

But i actually feel quite angry about this article. I mean i dont like everything the MEA do, i have criticised them on some of the ways they do things. And i dont agree with everything that Charles Shepherd says - he & the MEA are imperfect as are we all.

However what i do know, is that that man (Dr S), has worked tirelessly for PwME for decades, and i feel certain that the landscape for PwME would be a darn site worse in 2024 if it werent for him. Goodness! The stuff he has done... every press article pretty much, all through the PACE & 'harassment' debacles, time after time, i'd look and there's Dr S sticking up for us. Meetings with the DWP trying to get them to understand things for us better - & succeeding just a little - its still bad for us, but just a tiny bit better thanks to him. Leaflets and template letters and goodness knows what else, not to mention personal support to several people i know who are members - speaking to the 'powers that be' on their behalf.

No I'm not having it! This hit piece is unwarranted and out of order IMO. He is imperfect but he's tried really really hard and made a lot of personal sacrifices to lobby for us in parliament going to countless meetings, oh goodness i lost count of everything i seen him do over the yrs, and thats just what we know about!

It's not his fault its been 2 steps forward & 2.5 steps back! He hasnt done a perfect job, but we have a sh*t load to thank him for, especially as he is a sufferer himself with all the challenges that brings, and this slap in the face is outrageous. No, I'm sorry, it's not ok slagging them off like this & making accusations & denigrating their work!

I was distinctly unimpressed with the MEA for their response after Sarah Tyson's abusive rant here, but credit where its due, and Dr Charles Shepherd deserves a lot. The Canary have got it very wrong in this piece i think.

And these 2 quotes (AFAIA) arent even factually accurate.

Moreover, some of these connections in particular may signify part of the reason why both have been so slow to take action in Millie’s and Carla’s cases.
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Ultimately, at the end of the day, the two largest ME charities in the UK have been noticeably absent at a critically urgent moment for two young women living with severe ME.
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My understanding is limited, but as i understand it Dr Shepherd has been involved trying to help Millie from early on in the situation. I'm sure i've seen somewhere that it said Dr Shepherd (from the MEA) & someone else (either Dr Wier or Dr Speight) were trying to help. Certainly the MEA fb book page has shared more than once the news articles about the situation and said he is working with colleagues to try to do something.

And TBH even if he weren't I'm not sure what they expect the charities to do anyway... do they think an NHS consultant is going to listen to an advocate from a charity.

The state of play is distressing for us all, & unimaginably traumatic and horrific for families & paitents like Millie & Carla, & all the others, but lashing out unfairly at people that are trying to help is not the answer. Constructive criticism is one thing, but this isnt that.
 
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JemPD said:
I dont think this is ok. I'm not happy about it at all. I cant speak about AfME because i know little about them. So my comments are manily about the MEA.

But i actually feel quite angry about this article. I mean i dont like everything the MEA do, i have criticised them on some of the ways they do things. And i dont agree with everything that Charles Shepherd says - he & the MEA are imperfect as are we all.

However what i do know, is that that man (Dr S), has worked tirelessly for PwME for decades, and i feel certain that the landscape for PwME would be a darn site worse in 2024 if it werent for him. Goodness! The stuff he has done... every press article pretty much, all through the PACE & 'harassment' debacles, time after time, i'd look and there's Dr S sticking up for us. Meetings with the DWP trying to get them to understand things for us better - & succeeding just a little - its still bad for us, but just a tiny bit better thanks to him. Leaflets and template letters and goodness knows what else, not to mention personal support to several people i know who are members - speaking to the 'powers that be' on their behalf.

No I'm not having it! This hit piece is unwarranted and out of order IMO. He is imperfect but he's tried really really hard and made a lot of personal sacrifices to lobby for us in parliament going to countless meetings, oh goodness i lost count of everything i seen him do over the yrs, and thats just what we know about!

It's not his fault its been 2 steps forward & 2.5 steps back! He hasnt done a perfect job, but we have a sh*t load to thank him for, especially as he is a sufferer himself with all the challenges that brings, and this slap in the face is outrageous. No, I'm sorry, it's not ok slagging them off like this & making accusations & denigrating their work!

I was distinctly unimpressed with the MEA for their response after Sarah Tyson's abusive rant here, but credit where its due, and Dr Charles Shepherd deserves a lot. The Canary have got it very wrong in this piece i think.

And these 2 quotes (AFAIA) arent even factually accurate.



My understanding is limited, but as i understand it Dr Shepherd has been involved trying to help Millie from early on in the situation. I'm sure i've seen somewhere that it said Dr Shepherd (from the MEA) & someone else (either Dr Wier or Dr Speight) were trying to help. Certainly the MEA fb book page has shared more than once the news articles about the situation and said he is working with colleagues to try to do something.

And TBH even if he weren't I'm not sure what they expect the charities to do anyway... do they think an NHS consultant is going to listen to an advocate from a charity.

The state of play is distressing for us all, & unimaginably traumatic and horrific for families & paitents like Millie & Carla, & all the others, but lashing out unfairly at people that are trying to help is not the answer. Constructive criticism is one thing, but this isnt that.
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I think Dr Shepherd deserves an MBE/OBE/knighthood for the unpaid work he has done over many decades. If he has been nominated and not got one, it was most likely because of standing up to the biopsychosocial school and the like.
 
This isn't for the general public, unlikely to get noticed much, but it's probably a good thing for the charities to get the message that no good comes out of associating with BACME or any other group of psychosomatic ideologues. I truly don't get what they think they get out of it. Our needs and their wants are mutually exclusive in every possible way.

There is this brain-rot idea everywhere about always trying to do "bipartisan" compromise, even with people who systematically reject any such attempt when it goes against them. It's a common message within the ideologue community, that we must be open to their ideas, while they never extend the same to, well it doesn't really matter because the conflict is not over ideas, or beliefs, but over what's true and right, and over what people need, which is the opposite of what they want. We want science and competent health care, they want their beliefs to have supremacy. There is no common ground here.

We've even seen how it extends with BACME. They did not explicitly object to the NICE guideline, but everything out of the organization since shows that no matter how much they say this, they do the opposite anyway. They're not as openly duplicitous as the recent fake update to the ME/CFS guideline in Australia, where they simply substituted "Graded exercise therapy" for "Incremental activity program" and left everything the same, but it remains that our needs are mutually exclusive with their wants.

In the end, once there is a breakthrough freeing millions of lives from this misery, none of the ideas espoused by the likes of BACME will be of any relevance. Not a single one. They will simply cease their activities once that happens, their irrelevance exposed. So really it's all for nothing, and as failures like the MEAssociation's funding of the foolish brain game study shows, all it does is waste resources and time.
 
Kitty said:
Yes, that's why I read it when I saw it online yesterday. I realise he has a personal investment in the topic, but it seems at odds with the approach in his other work.
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Topple didn’t write this one - it was another writer called Hannah Sharland who I haven’t heard of, but you’d imagine Steve had some input. (Full disclosure I’ve worked with Steve in the past and am a huge fan of his)
 
Evergreen said:
I agree with @JemPD and @Dolphin. I have such respect and gratitude for Dr Shepherd. Occasional quibbles about an MEA stance or action won't change that.
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Yes, though I don’t always agree with the MEA’s choices and with Charles Shepard’s positions on some issues, the charity and Charles have done a remarkable amount for people with ME in this country, and I would agree he deserves a knighthood for his services to our community. Also Charles makes himself freely available to people with ME through the charity and their social media responding openly and patiently to disagreement and criticism often at times when there are many other demands on his time and energy.

This reporter’s criticisms of BACME are well founded and it is probably arguable that overall people with ME in the UK would be better off if the specialist services ceased to exist, however I feel, though the two charities attacked could be more outspoken in their criticisms of BACME, we would be much worse of if the two charities ceased to exist. Certainly they can not be held responsible for the actions of professionals who they have no direct control over.
 
I didn't appreciate this article at all.

Perhaps The Canary could find the time to listen to this, if they haven't already. Anaesthesia on Air / The perioperative management of patients with ME and Long COVID (audioboom.com) with Dr Shepperd MEA and Helen Baxter 25% Group working collaboratively with the Royal College of Anaesthetists to make a practical difference for patients in hospital and dentists.

"In this episode of Anaesthesia on Air Dr Anton Krige, RCoA Clinical Lead for ME/CFS, talks with Dr Charles Shepherd from the ME Association and Helen Baxter, a patient advocate for ME patients, about the College's latest patient information project ME/CFS and anaesthesia. They explore this poorly understood medical condition and the strategies that anaesthetists will find useful in managing these patients in the perioperative period."
 
Wrong emphasis should have been focus on BACME and saying in view of all this the charities should be more sceptical of BACME.

as others have said I have had criticisms of the charities in the past and some ongoing issues where I disagree but on some aspects both have shown progress- AFME setting up their counselling service, the advocacy service, MEA stopped charging for their leaflets. I think that the trustees could do much better.

I realise that BACME are still the people with their bums on the NHS seats but that doesn’t mean there has to be a change of name with all the same people. I’ve seen plenty of teams in public sector subject to reorganisations where most of the team were moved on. The charities need to understand trying to work in partnership with existing people isn’t the way to go.
 
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