UK: New advocacy resource for people with ME in hospital

[Andy]

"In response to increasing requests for advocacy support from people with ME/CFS in hospital, including those more severely affected, The 25% ME Group, Action for M.E., Blue Ribbon for the Awareness of ME and the ME Association have co-produced a new resource.

Supporting people with ME/CFS in hospital is designed to help patients, carers and family members advocate for their needs, choosing which sections of the resource they would like to share with the health professional treating them.

Noise, light, sleep disruption and adverse reactions to medication can all worsen the symptoms of ME/CFS, so a hospital environment can be very challenging. This can be compounded by a lack of understanding about the illness, and disbelief about its severity."

More at https://www.actionforme.org.uk/news/new-advocacy-resource-for-people-with-me-in-hospital/

 

[cassava7]

This initiative is commendable especially given the recent cases of people with very severe ME being mistreated in the hospital. However, this document won’t solve the crux of the issue which is that ME/CFS diagnoses and the NICE guideline are being ignored, or even bypassed by changing the diagnosis to that of a psychosomatic illness. A hospital doctor that has no interest in ME/CFS or is hostile to it (and probably does not have any time to spare to learn about it anyway) will not read a 15 page document or even a 2 page letter, especially if it has an authoritative tone in the sense that it requires them to comply with the NICE guideline.

 

[Nightsong]

There's some good stuff in this, and I'm always gratified to see sensory issues being addressed with the seriousness they deserve.

Am I the only one to think it jumps around a little too much between the general needs of the majority of pwME and the needs of a relatively small handful of very severe patients? Most severe and some very severe pwME won't need "a medical-technician crew. . . [with] monitoring and/or medication during the journey. . . will arrive on a stretcher. . . a Patslide"; those are only applicable to a relatively small handful of very severe patients. While everyone's needs will differ somewhat it might've been useful to have different sections spelling out the likely needs of mild/moderate/severe/very severe patients separately.

There are (inevitably) some things I don't agree with. For instance these points (among others) will, in my opinion, prevent many doctors from taking it seriously:
- "With regards to enteral and parenteral feeding, a feeding tube should be considered early, if appropriate."
- "Medication side effects may be related to an exaggerated sympathetic nervous system response to foreign substances and not reflect known pharmacological side effects of medications."
- "People with severe and very severe ME/CFS may have Mast Cell Activation Syndrome (MCAS). If this is suspected, medications that support more stable mast cell function could be considered."
- "Start medications one at a time and at a low dose (10 - 25% of usual)."
- "Early intervention tube feeding is to be encouraged and has been shown to be beneficial. It may be necessary to use feeds such as Elemental. Where gastrointestinal symptoms are severe Mast Cell Activation Syndrome (MCAS) should be considered."

 

[Hutan]

Sounds like a good suggestion to separate out recommendations for more severely affected people.

"With regards to enteral and parenteral feeding, a feeding tube should be considered early, if appropriate."

I don't understand your comment on this; can you explain a bit more? It may prevent some doctors taking the advice seriously, but is it not a reasonable recommendation? (Genuine question, I don't know about this.)

"Start medications one at a time and at a low dose (10 - 25% of usual)."

I can certainly see how this recommendation could cause all sorts of problems and harm, not least in pain control. I hope that they will review this.

 

[Nightsong]

I don't understand your comment on this; can you explain a bit more? It may prevent some doctors taking the advice seriously, but is it not a reasonable recommendation? (Genuine question, I don't know about this.)

Enteral feeding is reasonably safe but still not without risks. If I remember correctly... change of bowel habit from the feeds is common- NGs/NJs: hoarseness & discomfort are fairly common; there's an aspiration risk: if the tube does become displaced and feed spills into the respiratory tract you can get serious complications like pneumonia & pneumothorax; rarely vocal cord paralysis. PEG-G/Js: risk of perforation, of infection, the PEG can become dislodged leading to leakage around the site and so need replacement, they can migrate.

In an at-home feeding situation I imagine many severe & almost all very severe pwME would have difficulties setting up the pump, unclogging, dealing with the inevitable pump alarms.

Parenteral feeding is significantly more risky: infection risk is much higher & obviously infection of a central line can be very serious indeed (and I don't know if there's any data on this but I'm sure the risk would be much higher in an at-home TPN situation), also (if I remember correctly) electrolyte derangements & other metabolic complications, elevated risk of kidney disease, and the lipids can be hard on the liver.

Enteral & especially parenteral feeding in ME/CFS is controversial enough as it is without suggesting that it be done early. The way it's worded is going to come across as potentially reckless and there's no mention of more conservative measures like liquid nutritional supplements, prokinetics, etc. I think it all needs to be worded a bit more conservatively.

 

[Hutan]

Thank you @Nightsong, what you say makes sense. I suppose the writers may have been trying to convey a sense of 'don't leave it too late' in response to a feeling that that is what is happening, when what is needed is simply good clinical care applied without discrimination and with empathy.

 

[Sean]

I can certainly see how this recommendation could cause all sorts of problems and harm, not least in pain control. I hope that they will review this.

For example, antibiotics, which are not really amenable to that kind of titration and ramping to get to the baseline dose.

 

[Peter T]

- "With regards to enteral and parenteral feeding, a feeding tube should be considered early, if appropriate."

I feel it is not fully clear what the authors intended here.

Historically in other conditions such as MND (ALS) non oral feeding methods were only considered after the fact of oral feeding becoming very difficult and/or unsafe, whereas now they are considered as part of a long term plan to be introduced as they become appropriate and not after they have been needed for some time. The difference between being proactive and reactive. In this situation the consideration should be happening early so that the intervention is timely rather than the intervention being necessarily provided early.

There is an alternative interpretation that consideration for the intervention being undertaken early, before it is an absolute necessity. In some circumstances there might be good reasons where some oral feeding is possible but is either very slow or fatiguing such that running non oral methods along side oral feeding improves both quality of life and ensures adequate nutrition. In other conditions, again for example MND/ALS, where more is known about the course of the condition this is more clear cut. Also for example immediately following as stroke improvement in swallowing could be hindered or masked by malnutrition or dehydration such that a period of non oral feeding is necessary in order for the person to return to oral feeding.

However with very severe ME we don’t know enough to be categorical about when or how non oral feeding should be introduced and each case needs to be considered on its own merits. If these guidelines are suggesting that tube feeding should be born in mind by the physician early on to ensure prompt action when maintaining nutrition or hydration orally becomes an issue this is unambiguously a good thing and is perhaps necessary to stress given potential medical resistance to use of non oral feeding in ME. However if the guidelines are suggesting non oral feeding be introduced before it is strictly necessary to maintain nutrition and hydration, that is more ambiguous. It could be that is some circumstances when oral feeding is particularly time consuming or fatiguing that non oral feeding could significantly improve quality of life and/or help break the cycle of rolling PEM, however addressing this more complex issue, along with the risks involved in tube feeding set out by @Nightsong requires more than a throw away line.

[added - Cross posted with @Hutan who said what I was trying to convey much more succinctly.]

 

[Jonathan Edwards]

Enteral & especially parenteral feeding in ME/CFS is controversial enough as it is without suggesting that it be done early. The way it's worded is going to come across as potentially reckless and there's no mention of more conservative measures like liquid nutritional supplements, prokinetics, etc. I think it all needs to be worded a bit more conservatively.

I am not sure what is controversial about these methods of feeding. There are standardised guidelines for when to use various methods, in the UK provided by the British Association for Parenteral and Enteral Nutrition. If any deviation from the general principles applies in ME/CFS we so far have no reliable evidence to support it.

Much the biggest problem in the UK has been refusal to make use of these techniques or to provide access to them at home with domiciliary care. In my own experience of care of people with feeding difficulties the repeated problem is of not considering assisted feeding early on. Considering does not entail actually doing it, but I think the emphasis is appropriate.

There are complications of these methods, yes, but we are presently faced with a series of patients who have died, at least in part because of lack of provision of feeding support.

 

[Jonathan Edwards]

I do have reservations about some of the other recommendations. Reference to 'MCAS' has no place here. Recommending changing drug dosages is also inappropriate. I am not sure where these suggestions are coming from but some of them are not evidence based or well thought out.

 

[Nightsong]

If you have time, @Jonathan Edwards, I'd suggest reading the entire document. There's also stuff in there about benefit from IV saline, patients only tolerating specific brands of drugs due to variations in excipients (possible but surely very rare), an "exaggerated sympathetic nervous system response to foreign substances", the suggestion of intolerances to "the preservatives used in ready meals", a suggestion that discontinuation of benzodiazepines and opioids can result in an "amplified" withdrawal syndrome in pwME (which may be true but I don't think there's any real evidence for that), and a suggestion that patients may be more intolerant to feeds. The contention that "early intervention tube feeding is to be encouraged and has been shown to be beneficial" - where has that been demonstrated? Where the evidence is from anecdote or the clinical experience of the authors that should be made clear.

I'm very well aware that people have died who needed but did not receive enteral feeding. I also have my own (relatively minor) experience of this problem. But if you think about this document from the perspective of an average gastroenterologist who will not have come across a very severe pwME before, do you really think they will be convinced by it?

I may be wrong - I often am these days, it seems, and I'm very glad to hear you're not concerned by this. But I still do not think that the tone is ideal, and I still think that a more cautious approach would be far more convincing.

 

[Jonathan Edwards]

But if you think about this document from the perspective of an average gastroenterologist who will not have come across a very severe pwME before, do you really think they will be convinced by it?

I may be wrong - I often am these days, it seems, and I'm very glad to hear you're not concerned by this. But I still do not think that the tone is ideal, and I still think that a more cautious approach would be far more convincing.

Yes, I absolutely agree with that. (I have read the whole thing.)
The tone seems counterproductive.

And I agree that 'early intervention tube feeding.. oversteps the mark.
The problem I see, talking to physicians with various viewpoints, is that the alternative is more common and worse - that the Lightning Process is a jolly good idea and that patients should be pushed even if it is difficult at first...

The pity is that this document seems tone deaf to the reality of the sources of conflict between interested parties.

 

[Cinders66]

To give context here For those who are not severe /Acutely aware of what people are facing in hospitals, this was written by the mother of Emily Collingridge who died in 2012 in hospital, arguably killed by the hospital. https://25megroup.org/wp-content/up...txYl4oG1SZP6xEqcC4UC5zKjmIU6CxV0R5TPVAaL9te9R It’s not clear in the writing here, but she was kept in hospital trying to get her inability to swallow without extreme pain managed and kept alive by some form of tube despite her body having rejected standard tubes in the past (in an atypical and probably beyond simple explanation way) .. This type of protective, authoritative document was needed for decades, I’m glad it’s here now but it’s too late for people like myself and Emily. I would rate advocacy material based on what was being fed back through patients who’ve experienced this and the charities /drs who have worked with them, vs worry about what a hyper ME-sceptical gastro dr might be hostile to be honest. I think that is what is being reflected In the recommendations that are being put in questionable quotations by some here.

 

[Hutan]

That's very useful context, thanks @Cinders66.

I would rate advocacy material based on what was being fed back through patients who’ve experienced this and the charities /drs who have worked with them, vs worry about what a hyper ME-sceptical gastro dr might be hostile to be honest.

I think though that we do need to worry about what sceptical doctors will think, because that is the audience that I think we are trying to persuade. They, to a very large extent, are the ones with the control when a person with ME/CFS is in hospital.

There is a lot of useful information in it; I like that it starts with an excerpt from the NICE Guideline and explains how that is relevant, including in Scotland. Although the NICE Guideline excerpt does mention the range of severities, I think explaining that more explicitly up front would be helpful. I also think that would allow a better framing of the needs with an understanding of what the illness involves. Many medical people handed this document won't know what ME/CFS is, or certainly not in the detail that would be helpful. So, I suggest there could be a paragraph about what mild and moderate ME/CFS looks like and what severe and very severe ME/CFS looks like.

See below for an example where the distinction between mild/moderate ME/CFS and more severe ME/CFS is not made clearly. See where I have added the 'XXXXX'. There is a paragraph break between a statement about what people with severe and very severe ME/CFS need, and a comment about travelling with a medical technician crew and arriving on a stretcher. Just removing that paragraph break would be a significant improvement.

If it is necessary to people with ME/CFS to attend outpatients eg. for a scan:
· provide a quiet space with low sensory stimulation for people with ME/CFS where they can rest and lie down if necessary.
· make sure they are near to toileting facilities.
· ensure transport is arranged for their return home. If they are coming by ambulance, try to use ‘wait and return’ to ensure they are not waiting for long periods.
· where multiple tests are required think about whether they can be done in one visit

People with severe and very severe ME/CFS will need the ambulance transport to be justfor them as they are too ill to travel additional distances to collect other patients.
xxxxx

They may need to travel with a minimum of a medical technician crew rather than with Patient Transport. They may require monitoring and/or medication during the journey. They will arrive on a stretcher.
· If the person is going to have to get off the stretcher, ensure a bed and Patslide are available.
· Ensure there is space for the stretcher, including in consulting rooms. If there is not space, ensure an alternative quiet space is provided for the consultation.
· Provide written documentation of the discussions and treatment plans.
· Work with family members, advocacy workers and home care workers if requested by the person with ME/CFS. This conserves the patient’s energy.

Do not remove a person with ME/CFS from your list if they fail to attend an appointment, as this may be due to worsening symptoms. The 2021 NICE guideline

Start medications one at a time and at a low dose (10 - 25% of usual).

- that will make most doctors question the accuracy of the guidelines and, if followed, could cause harm.

MCAS is controversial, I still don't know what I think about it, I haven't looked into it properly, as will be the case for many doctors too. I wonder if there is a way to express the same caution but without the MCAS label? What exactly are the symptoms that are included under that label? Could you say that many people with ME/CFS will have intolerances to various sorts of food, for example, and explain what the intolerances look like?

There are still some typos in the document.

· Reduce synthetic smells as far as possible – eg. scented beauty products onhospital staff, smoke and cleaning products.

Sensitivities like this could instead be expressed as a possibility. I and many people with ME/CFS don't have these sensitivities and so don't need accommodations for this e.g. 'Ask if the person has a particular sensitivity to smells. If so, reduce smells as much as possible. Consider scented beauty products and the smell of cigarettes on hospital staff, and cleaning products.'

I've only got to part of the way through page 4, but I'm still seeing that mixing up of the needs of people with severe ME/CFS with the needs of people with less severe ME/CFS. I actually wonder if the document might be better focussed solely on people with severe illness. Frankly, if I turned up at a hospital, relatively mildly affected as I am, presenting the document would probably result in me receiving worse care, probably having some marker in my notes about delusions of illness, hypochondria, and expecting a stretched system to cater to my eccentric needs. People relatively mildly affected are probably better off just explaining any particular needs they have.

I do hope that the people involved with this document will do another edit, taking into account the feedback in this thread, which is meant constructively, so that it can be as effective as possible. Perhaps a friendly but skeptical doctor could be worked with on this?

 

[Jonathan Edwards]

Frankly, if I turned up at a hospital, relatively mildly affected as I am, presenting the document would probably result in me receiving worse care, probably having some marker in my notes about delusions of illness, hypochondria, and expecting a stretched system to cater to my eccentric needs. People relatively mildly affected are probably better off just explaining any particular needs they have.

This would be my main concern right from the outset. There is no point in having an information sheet that sounds right to patients but which ensures that health care staff will switch off completely and go for the psychosomatic approach. People are likely to die as a result.

It isn't easy but I think if charities want to provide information they need to do it in an extremely sensitive way. The information should be attributed to a particular expert or to published material. No doctor has any reason to follow guidance unless one of those applies. If it is the opinion of an expert that is fine - but they have to say who they are.

I am not sure how the information sheet will be responded to but if I was a busy junior doctor or a nurse I would assume that I have no authority to follow such material rather than what I had been taught. Some of the material is simply a way of letting staff know about problems with environmental stimuli and such. But when it comes to recommendations about care that raises serious legal and ethical difficulties I think.

What if Michael Sharpe produced a competing sheet telling staff to behave quite differently? How would staff know which to follow?

 

[Hutan]

Yes, it's so true that efforts to educate can be completely counter-productive if not done right. (And probably even sometimes when they are done as right as is possible).

I do think that the fact that the document has been produced with the support of a number of patient charities, and those charity logos do appear on the first page, does give some credibility. For example, if the Multiple Sclerosis Association produced a document based on the NICE MS Guidelines, I think that would not be immediately dismissed by medical professionals. Michael Sharpe does not have that support.

But, it's the NICE guidelines that are really the source of authority, so I think the content needs to be explicitly aligned with the guidelines, with some commentary about how relevant guidelines can be operationalised. I'd even call it something like 'Guidance on the operationalisation of the NICE ME/CFS Guidelines for hospital care of people with severe ME/CFS', to maximise the impact of the authority of NICE.

 

[Jonathan Edwards]

I do think that the fact that the document has been produced with the support of a number of patient charities, and those charity logos do appear on the first page, does give some credibility. For example, if the Multiple Sclerosis Association produced a document based on the NICE MS Guidelines, I think that would not be immediately dismissed by medical professionals. Michael Sharpe does not have that support.

Isn't there a n FND society, probably run by Jon Stone, though?
Sharpe has the support of the Royal College of Psychiatrists and even the Royal College of Physicians when it comes to ME/CFS. The MS Association is different because everyone gets taught about MS and it is not a 'contested illness'.

 

[Hutan]

The MS Association is different because everyone gets taught about MS and it is not a 'contested illness'.

Certainly MS is different. But I think it's still legitimate for the ME Association, for example, to expect to have credibility when publishing a guidance on operationalising the ME/CFS guideline. To some extent, if patient charities act like respected patient advocates then at least some medical professionals will give them a chance. But, as we have been noting, if you are aiming to be seen as a patient advocacy organisation that commands respect from medical professionals, you have to be very very careful about what you say and how you say it.

I wonder how much support FND Hope or whatever has. But yes, they are a danger and we must work against ME/CFS being seen as a type of FND, and against people with ME/CFS being given an FND label and, I think, against the label of FND being applied to any group for whom there is no credible evidence that psychological treatments work.