Severe difficulties with eating in ME/CFS

https://twitter.com/user/status/1649484680352223242

 

I can't access the article yet, so don't know if it will be a useful review, but the abstract suggests it might.

COVID-19 and the gastrointestinal tract in children (2023, Current Opinion in Pediatrics)

 

https://www.mind.org.uk/information...g/my-rights/#WhatAreMyRightsWhenIAmInHospital

Explains the rights that you have if you are sectioned and detained in hospital under the Mental Health Act 1983.

• This information applies to England and Wales.
• This information applies to adults. It doesn't apply to children unless specifically stated.

Patients have a right to request an IMHA and a Mental Health Tribunal (although it appears that for the latter if you are detained under section 2, you (or your advocate) have to apply within the first 14 days).


https://www.mind.org.uk/information...g/my-rights/#WhatAreMyRightsWhenIAmInHospital

An IMHA is an advocate specially trained to help you find out your rights under the Mental Health Act 1983 and help you while you are detained. They can listen to what you want and speak for you.

• You have a right to an IMHA if you are:
  detained in hospital under a section of the Mental Health Act, but not if you are under sections 4, 5, 135 and 136
• under Mental Health Act guardianship, conditional discharge and community treatment orders (CTOs)
• discussing having certain treatments, such as electroconvulsive therapy (ECT).

Nearest relative's rights:

https://www.mind.org.uk/information-support/legal-rights/nearest-relative/overview/

https://www.mind.org.uk/information.../nearest-relative/about-the-nearest-relative/

 

Thank you @Dx Revision Watch for this info.

 

Moved post

There seems to be a wider context which seems concerning generally .

We know that ME / CFS is not an eating disorder.
The overarching parameters seem worrying for this specialism

https://www.theguardian.com/comment...ens-scandal-eating-disorder-treatment-england

 

PLease move if in wrong place

I just found the following pages on 'best interests' - I'm sure people have read these sorts of things in many different places but found this one interesting as it is necessarily a different angle as it covers those with learning difficulties, but I wonder whether for certain circumstances where specific reasons/issues are being suggested or used for situations related to liberty or 'best interests' is it really 'un-applicable'?

And to hopefully sound not completely obscure but might those expert in areas where this issue might come up more commonly be more 'expert' and more likely to have eg advocates , and know contacts in law etc who have seen more of the ins and outs of how these thinks work and what it looks like in other people from first hand cases of different conditions and situations?

Note when I search for DOLS or use the full words for Deprivation of Liberty Safeguarding the bracket (Mental capacity act 2005) is coming up with it quite a bit

:
What is The Mental Capacity Act? | Mencap

as it mentions that everyone has the right to an independent advocate for these processes:
Independent Mental Capacity Advocate (IMCA) - SCIE

and includes:

"What if the person’s family don’t think the final decision made is truly in the person’s best interests?

If others do not think the final decision has been made truly in the person’s best interests they have the right to challenge it. There are various things that can be done, for example you can:

• ask for an advocate to be involved
• ask for a second opinion
• make a complaint.

If none of these things work, and there is still a disagreement, the Court of Protection could be asked to decide the matter."

 

There is some discussion going on between a group of relevant people in the UK. I won't give details but various people are trying to get somewhere.

I think some form of document needs to be published that sets out the reality of the situation and a model protocol, even if it is not initially formally approved by professional bodies. It can be quite brief. I am trying to work out the best way to get that to happen.

 

Hey hopefully some middle ground can be obtained where we can all agree that letting people die of starvation is not OK even if it's not explicitly written in detailed instructions under a sub-heading for whatever label they want to apply here. Wish we were here but clearly not.

I used to think a lot of politics, how to organize society and so on, and for a while thought that one of the ways we could move forward as a species was to work where we have consensus, ideas that we all agree on. I eventually realized this was completely delusional thinking. For every good idea, 30% of the population will be absolutely fanatically convinced that it's the worst idea in the world and will bring about the end of the world. Humans are freaking weird as all hell and don't reason any better than whoever first started cooking meat around camp fires.

I've also been thinking lately about other civilizations, and whether humans are the weirdest of them all, or somewhat standard, and all possible implications are frankly terrifying.

 

I'm assuming this is largely medical information written by medics? If it would be of value to include push back on some of the psychological diagnoses/processes/wonky thinking that can be used/abused in such situations etc please do let me know. I and colleagues (including several with ME) are currently working on a best practice guideline for psychologists working with pwME. This will include situations like this. Our guideline will take time but inclusion of the British Psychological Society who do not at all endorse the 'biopsychosocial' model of ME/CFS may be of value. Let me know if you would like input.

 

Thanks @Joan Crawford.
Some information on alternative diagnoses might be useful.
Part of the problem is clearly that people classifiable as severe ME/CFS can also arguably be classified under various psychological labels. I would like to find a way of pointing out that this makes no difference to treatment policy unless there is a reliable evidence base for treatments involving exposure to poorly tolerated stimuli (GET, taking off eye masks etc etc) - which I am sure there isn't. Knowing what the labels are and where treatment 'guidelines', if such exist, are written may be important.

I think this is actually the key part of what needs doing, since otherwise it is just a matter of saying that in the absence of specific evidence, patients should be treated on the general principles of ME/CFS care (stimulus challenge having no evidence of efficacy and plenty of prima facie evidence for harm) and getting on with feeding according to the nutritional guidelines from BAPEN.

 

Haven't been following this & I've very little knowledge, but that seems to sum it up - treat them - prevent them dying unnecessarily.

 

I have just re-read this thread and realised that we went through all this in so much detail a year ago and then seemingly got nowhere!

I have done a bit better in terms of contacting relevant people this time.
I am somewhat overawed by the task of doing something useful but I will see if I can make sense of it again over the next week or so.

 

https://meassociation.org.uk/2024/0...ion-people-with-me-cfs-at-risk-of-starvation/

ME Association Statement and Parliamentary Question: People with ME/CFS at risk of starvation

April 22, 2024

 

https://www.bmj.com/content/383/bmj.p2372/rr

 

Interesting letter, worth reproducing in full. Thank you @MrMagoo

Rapid response to:


We need better care for long covid and ME/CFS
BMJ 2023; 383 doi: https://doi.org/10.1136/bmj.p2372 (Published 17 October 2023)Cite this as: BMJ 2023;3832372

• Article
• Related content
• Article metrics
• Rapid responses
• Response

Rapid Response:
Steps doctors and other medical professionals can take today to improve medical care for people with Myalgic Encephalomyelitis
Dear Editor,

“For patients with severe [or] very severe ME there are no commissioned specialist inpatient services both regionally and nationally” ~ Dr Anthony Hemsley, medical director at Royal Devon & Exeter hospital

The above is a quote from the 2023 pre-inquest inquiry meeting into the death of Myalgic Encephalomyelitis (ME) patient Maeve Boothby-O’Neill who died under NHS care on October 3, 2021. Unfortunately, Maeve was not the first ME patient to die from her condition due to lack of appropriate care, and she is unlikely to be the last.

Here, I build on Dr. Hemsley’s observation and the BMJ Letter written by Alexis Gilbert [1] to describe the lack of systems of care for people with ME. While the systemic changes needed to transform care for people with ME will take time and considerable effort, there are concrete steps that individual medical professionals can take today to fill the void.

I developed ME after a viral infection when I was 15. As a biologist and ME patient, I have followed ME research closely and have become a ‘patient expert’. In my experience, both medical professionals and the public are often under the impression that people with ME have specialist care and medical teams, much as other severe diseases do. Unfortunately, this could not be farther from the truth.

The NICE guidelines on ME changed in 2021, calling for Specialist Centres of Excellence, but no progress has been made. We have no in-patient centres, or clinical treatment guidelines for providing symptom management, such as exist in international primers [2]. Further, due to misunderstanding our illness as psychological and lack of awareness of our needs, ME patients often suffer unintentional neglect and harm in hospital settings. I know ME patients who, as I write this, are suffering under hospital care due to lack of knowledge about the disease. Hundreds of others go without access to basic medical care or screening services because they are too unwell to travel and there are no at-home medical services.

The current lack of services does not preclude care improvements. As doctors, nurses and other medical professionals, you can help to reduce the suffering and dismissal we experience. If you think you don’t have patients with ME, think again. We attend A&E, cardiology, oncology etc just like everyone else, yet we often receive suboptimal, even harm inducing, care from those who don’t understand our specific needs.

ME has no licensed treatments but there are things that you can do to improve patient care:

• Lerna provides a free CPD accredited 1-hour module on ME [3] developed with experts via the ME Association.
• For a longer course, Stripy Lightbulb CIC [4] offers CPD accredited e-learning courses on ME for healthcare professionals.
• Read key pieces of clinical literature such as Montoya et al [5] and Baxter et al [6] on the life-threatening malnutrition in Very Severe ME to better understand how to care for the most vulnerable ME patients.
• Consult the concise review for clinicians published by Grach et al in 2023 [7] in Mayo Clinic Proceedings (providing continued medical education credits).
• For physiotherapists, the book “A Physiotherapist’s Guide to Understanding and Managing ME/CFS” [8] is a must-read.

At least 50% of people with long COVID meet the criteria for ME [9, 10], meaning the number of people in the UK with this devastating disease is dramatically increasing and is estimated to stand at more than 1.25 million [11]. Similar to other patients with ME, patients with long COVID lack systems of care that comprehensively meet their needs. Please, act now and take some of the steps outlined above to improve care for people with ME who seek care from our NHS.

Dr Naomi Harvey BSc, PhD, AFHEA

References
1. Gilbert A. We need better care for long covid and ME/CFS. BMJ 2023; 383 2372 doi:10.1136/bmj.p2372
2. Friedberg F, Bateman L, Jason LA, et al. ME/CFS: A Primer for Clinical Practitioners. 2014. Accessed on 1st Feb 2024 at https://www.iacfsme.org/assets/pdf/Primer_Post_2014_conference/
3. https://www.studyprn.com/p/chronic-fatigue-syndrome Accessed April 4th 2024
4. https://www.stripylightbulb.com/ Accessed April 4th 2024
5. Montoya JG, Dowell TG, Mooney AE, Dimmock ME, Chu L. Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Healthcare (Basel). 2021 Oct 6;9(10):1331. doi: 10.3390/healthcare9101331. PMID: 34683011; PMCID: PMC8544443.
6. Baxter H, Speight N, Weir W. Life-Threatening Malnutrition in Very Severe ME/CFS. Healthcare (Basel). 2021 Apr 14;9(4):459. doi: 10.3390/healthcare9040459. PMID: 33919671; PMCID: PMC8070213.
7. Grach SL, Seltzer J, Chon TY, Ganesh R. Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Mayo Clin Proc. 2023 Oct;98(10):1544-1551. doi: 10.1016/j.mayocp.2023.07.032. PMID: 37793728.
8. Leslie, K., Clague-Baker, N., Hilliard, N., Bull, M. A Physiotherapist's Guide to Understanding and Managing ME/CFS. Jessica Kingsley Publishers, London, 21 Aug 2023
9. Jason LA, Dorri JA. ME/CFS and Post-Exertional Malaise among Patients with Long COVID. Neurol Int. 2022 Dec 20;15(1):1-11. doi: 10.3390/neurolint15010001. PMID: 36648965; PMCID: PMC9844405.
10. Mancini DM, Brunjes DL, Lala A, Trivieri MG, Contreras JP, Natelson BH. Use of Cardiopulmonary Stress Testing for Patients With Unexplained Dyspnea Post-Coronavirus Disease. JACC Heart Fail. 2021 Dec;9(12):927-937. doi: 10.1016/j.jchf.2021.10.002. PMID: 34857177; PMCID: PMC8629098.
11. https://meassociation.org.uk/ Accessed on 4th Feb 2024

(my bold)

edit: As someone who attends hospital frequently (pain clinic and rheumatology and dentist in the current week), and I'm getting very much older and am now severe, I'm finding it extremely hard to manage in an ordinary clinic. There is no understanding of ME or orthostatic intolerance. At the pain clinic, all patients were called at the same time and it was 2 hours before anyone went in ( I was just about to go home as my sitting in one chair with feet up on my wheelchair was not working very well). I've postponed my rheumatology appointment because I am still crashed from pain so the appointment can go to someone else. The next step is not to go to any hospital appointments: I've only kept up so far because I am fortunate that Mr B accompanies me.
We need ordinary clinics who appreciate our specific needs. It's not unreasonable.

 

Thanks - I never know how to do that with the text, I managed it once then forgot!

 

That's a clear and concise statement of the situation.

I am progressing with writing something to publish open access. I think I need about another three to four weeks, maybe more, but I am beginning to think that I have most of the relevant material. I want to get some feedback from interested parties.

 

I know it is addressed to the NHS but it's so good I wish it was international and addressed to the NIH and CDC.