Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

Yes there is an insidious creep that I have seen since I have retired. I see this as due to financial pressures within the system. Not a reasonable reason but governments and their policies are squeezing the health dollar more and more. It is so easy to dump their patients into the "psych" basket, or the "we can't help basket" and not willing to investigate further or upskill themselves. I find it amazing, in a bad way, that suddenly they are all experts in diagnosing psychiatric disorders. Often they are in for a surprise when psychiatry refuses to see them (and often point out their lack of medical work up). It's expedient for them, bordering on criminal (medicolegal) neglect for the patients.

Please share @bobbler your recent reading in a new post, if possible, that sounds interesting, I am presuming this is for the UK. I would like to say in NZ, liaison psychiatry or any specialty within psychiatry don't have enough time to "hawk through the wards or catch them in A&E". There is not enough CL psychiatrists or general psychiatrists/registrars to do such a thing. We don't have enough psychiatrists to see anything but moderate to high risk psychiatric disorders. It is also ethically unsound.

 

The most recent one I spotted I started talking about here:
Financial Outcome Measure

There are 3 posts (ie two after this)

I was intrigued by the middlesex situation and was googling a bit.

Anyway one example is from there - which relates to the A&E dept using an 'initiative' for 7 of their most frequent flyers and involved liaison psychiatry

Another one I've listed on this first post (referenced in the first paper) is: A PILOT PROJECT TARGETING FREQUENT ATTENDERS AT THE EMERGENCY DEPARTMENT WITH MEDICALLY UNEXPLAINED SYMPTOMS | Emergency Medicine Journal (bmj.com)

That I haven't looked into yet but I'll be intrigued to. I can only view the abstract sadly. I've finally found the date is Oct 2013, so it would be well-embedded as an initiative if it was taken on and kept up until now.

The exact wording in the conclusion of the abstract is insightful I think:

"Conclusion Providing a psychological intervention to this patient cohort is effective in reducing hospital costs by containing the most frequent attenders. CBT and care plans have reduced attendance to under once per month and subsequently reduced medical interventions and prescribing costs."

I don't know but highly suspect that whilst this starts of as claims of 'the frequent attenders' being the target, once they've suggested that 'these tend to be those with MUS' then it becomes 'stop them being attenders' and a focus on whatever they've decided 'indicates potential MUS'.

And the intro para of the abstract has a line I think is insightful :

"Indeed, despite frequent medical investigations/treatments, their symptoms persist, their problems are not resolved, they frequently complain and they keep coming back. "

So their 'crime' is to have a condition that won't improve with the 'whatever treatment it is that they actually gave them'. The inference is these people were well-investigated:

"The needs of these patients were not being met by a traditional dualistic approach in which people are seen in either physical or mental health settings."

So they were fished out of their database and put on a CBT course.

 

Something that came up in today's testimony from Blackburn (the community dietician): he referenced a document he was familiar with about ME/CFS that had been produced by the British Dietetic Association.

I have been trying to find the source of this and I think this is it:

https://www.bda.uk.com/resourceLibrary/printPdf/?resource=chronic-fatigue-syndrome-diet

Haven't yet had the energy to read it fully so just mentioning this here as it might feed in to the discussions around a follow-up paper etc...

 

when/where was this?

 

He will come at you with his powerful manly cognitions that cured him of disease.

 

The British Dietetic Association webpage on ME/CFS, https://www.bda.uk.com/resource/chronic-fatigue-syndrome-diet.html

 

This particular document has been mentioned in the following thread: The Canary: The two leading UK ME/CFS charities are linked to an organisation fomenting the psychologisation of the illness, 2024, Hannah Sharland | Page 2 | Science for ME (s4me.info)

I mention in case it is useful to bring the contexts and comments together

 

Article now peer-approved.

https://www.qeios.com/read/T9SXEU.2


(Sorry not able to check whether any edits have been made.)

 

It is already published as peer reviewed in Qeios journal.
Qeios is an official journal as well as a preprint site.
But it also allows me to amend the article. The article version one remains a peer reviewed publication. Version 2 may get further reviews but as far as I know that doesn't impact the status of version 1.

 

I don't think these BSG guidelines on the management of adult patients with severe chronic small intestinal dysmotility have been posted here before; again, I wonder if these are contributing to the over-caution we are seeing in some very severely affected ME/CFS patients.

https://www.bsg.org.uk/getattachmen...5871f/gutjnl-2020-321631-full_.pdf?lang=en-US

In particular I'd note (a) the advice on fatigue management throughout, (b) the advice for FGIDs:

and (c) the commentary on hEDS:

 

Thanks very much for the pointer to that. It looks as if the same story as in the RCP advice is being spelled out in more detail here. It also demonstrates the complete confusion around 'hEDS', highlighting the problem that these people do not themselves have any understanding of the origin of false beliefs on the part of patients - i.e. from doctors.

The irony is that the people who are pushing back on things are themselves promulgating the memes that they are pushing back against. The whole thing is a complete mess.

 

That rings very true.

 

I am continuing to trawl the internet to help figure out what might be relevant to my son's difficulty maintaining weight, nausea & abdominal pain etc. Knowing that Gastroparesis has been mentioned as occurring in severe ME and aware as a T1D family that it is also a recognised comorbidity with that condition, I thought I'd search in relation to the latter. This paper had some useful information and the treatment recommendations are very clear. The obvious difference is that there is no doubt about the etiology of T1D. https://www.ncbi.nlm.nih.gov/books/NBK430794/

 

That is a clinical review by physicians with an interest in selling gastroparesis so I would treat it with caution. Sadly, medicine is now awash with these promotional reviews by people who don't necessarily have the scientific skills they seem to.

Uncontrolled diabetes is known to lead to autonomic system damage along with neuropathy and it would be plausible that this includes the gut but it may simply be someone joining dots in their head for most cases. As far as I know we have no indication of similar autonomic damage in ME/CFS. (Note that in postural tachycardia the autonomic feature is if anything in overdrive, not defective.)

I am still unclear on the relevance of and evidence for gastroparesis in ME/CFS but I am beginning to think that it may be a mistake to think of it as some extra abnormality rather than simply part and parcel of the intolerance response typical of ME/CFS. I am pretty sure that everyone has gastroparesis when they have 'flu'. It is not another disease, but, maybe like PoT, part of a normal response in an adverse situation.

 

So part of the “Sickness Behaviour” response? That would make sense in my son’s case as these symptoms occur during significant & prolonged crashes (rolling PEM) but are not obvious when he is at a moderate level and having shorter & less severe PEM. Incidentally he also has bad breath when he has these GI symptoms despite maintaining oral hygiene.

There does not seem to be any controversy about a Gastroparesis diagnosis in T1D. It is not as common as Coeliac which is routinely tested for on an annual basis.

 

I had just the same. When it was at its worst, the smell of my breath was so bad that people couldn't help recoiling.

The only thing that relieved it was not being deep in PEM. I was undiagnosed at the time and didn't understand that, so I had to put up with it for a large part of the 23 years it took to get a diagnosis.

It was investigated and I was told I was excreting food that was only partly digested, but no one knew why or what to do about it. I was prescribed digestive acids, but the tablets made me sick. I was very underweight (if I enter my height and weight at the time, a modern calculator gives a BMI of 15.5), but it was only because I couldn't get enough food through my system. My stomach wouldn't empty for eight or more hours after eating.

It eased for the first time after the really bad crash that led to my diagnosis. I'd been off work sick for eight months, had started to have a bit more function, and that made me realise the digestive problems were directly linked to the state of severe PEM I'd lived in since my teens. Since then I've been able to manage it better, and now I'm in my 60s and not working at all, it's infrequent and short term.

 

When I had Covid again this year, the chronic symptoms of gastroparesis, nausea and vomiting flared up by 100x.

 

I don't think this has been mentioned here before but is perhaps relevant to both this and the Problems with POTS thread: there was a small-scale retrospective review in 2008 of patients sent to a paediatric referral centre who had undergone both gastric emptying and autonomic reflex tests (n=31 of which 21 POTS and 10 non-POTS; >=30 bpm on HUT was used as the threshold value). There was no difference between POTS and non-POTS groups in terms of symptoms and HUT δHR was not a predictor of abnormal gastric emptying. Among the authors' conclusions:

and on the 30 bpm threshold: