Severe difficulties with eating in ME/CFS

Binkie4 said:
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.
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Ditto
 
Moved from:
The Canary: The two leading UK ME/CFS charities are linked to an organisation fomenting the psychologisation of the illness, 2024, Hannah Sharland

This is a little off topic from the article so mods may want to move or copy this to the feeding difficulties thread.

I want to comment on the 'when to suspect eating disorder' section of the BACME document that Evergreen quoted from

Evergreen said:
BACME document on severe ME/CFS (full document here: https://bacme.info/wp-content/uploads/2023/11/BACME-Severely-Affected-Shared-Practice-Guide.pdf):
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Pages 23-27 of the document deal with nutrition. 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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Evergreen said:
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.
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I completely agree but i am concerned about the SCOFF questionnaire being used to assess people with severe/very severe ME for eating disorder. In the same way as other questionnaires designed for healthy people to screen for depression etc (such as the HADS) can give very misleading results in people who have chronic illness, this questionnaire may also mislead.

N.B. this is not a comment about Luscome's attitude - she makes it very clear that she is not suggesting that people with feeding difficulties in ME are due to eating disorder. If you read the full quote above you'll see she says that misdiagnosis with an ED can do harm. I just spotted something with the questionnaire itself that i think is problematic & may be causing issues.

This is the SCOFF Questionnaire according to the BACME document Evergreen quoted - (its in the large quote above to show context but i have repeated the Scoff bit below just for ease of viewing)

"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."

Ok so Q1... well, when i am in a really really bad PEM bout, my stomach just doesnt seem to empty, so what i ate 12 hrs ago is still sitting under my diaphragm making me feel intensely nauseated to the point i cant sleep. This happens very infrequently, but sometimes when it does i will simply bend over the loo and i vomit. Just bending over is all it takes for me to be sick. This has nothing whatsoever to do with a desire to lose weight or anything else to do with an eating disorder, its simply that i just cant seem to digest it & lying on my side makes me feel so nauseated i cant sleep, so i see if it'll just empty a bit when i bend over - which it does. (Edited to add: this doesnt happen because i have overeaten its just part of a bad crash for me. I am the top end of a healthy weight).
So would that be seen as a 'yes' to that question? some would argue it wuld, and certainly someone who is struggling to communicate may struggle to articulate the difference.

Q2 Well someone who cant swallow and is struggling to get food down would certainly feel like they had 'lost control' over what they were eating, but not because they have an ED.

Q3 ok i guess but lots of people have rapid weight loss for all kinds of reasons. Cancer for example. Another example might be that someone suddenly develops allergic/intolerant to several foods, in addition to issues with swallowing & nausea, as could easily happen with someone who takes a big nose dive in severity after a particularly gruelling exertion period sending them into much worse severity.

Q4 This is the only one which is unambiguous alarm bell for an ED

Q5 Im pretty sure that if you have very severe ME, are unable to eat properly or get nutrition, that the needfor food/nutrition, and the attempts to get it would dominate your life entirely. But not because you're obbsessed with food/eating etc, but because a person with v severe ME basically has 'no life', they are stuck in bed in a dark silent room 24/7, so attempts to eat/get nutrition in some form when you(or your parents) are aware that you are malnourished/underweight & getting worse. Goodness the extra exertion caused by the intrusion & changes to routine ("lets try this" "oh dear now i have diarrhoea" and the extra exertion of repeated clean ups etc)! You're darn right it will be dominating their lives.

This questionnaire will cause rank misinterpretation, especially by people who have insufficient awareness of the realities of life with S/VS ME/CFS.

I think this survey is cause for alarm, and may be what is contributing to starving young women being misdiagnosed with an ED in NHS hospitals. Particularly when its teenage girls who are being assessed!

I'm too ill to do anything more, but if anyone agrees I think this should be copied to the feeding difficulties thread and possibly @Jonathan Edwards to be alerted to the fact that the standard screening for an ED will be misinterpreted & is unsuitable for use with People with ME/CFS with its current wording.

sorry that might be a bit garbled but i havent any energy left to re read & edit for sense... I hope someone will get what i trying to say as i think its urgent in view of the Millie/Carla etc situations

Edited it all appeared in 1 long quote box too foggy to sort it out may have made mistakes with quotes sorry @Evergreeen
 
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JemPD said:
i am concerned about the SCOFF questionnaire being used to assess people with severe/very severe ME for eating disorder. In the same way as other questionnaires designed for healthy people to screen for depression etc (such as the HADS) can give very misleading results in people who have chronic illness, this questionnaire may also mislead.
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Yes @JemPD I was looking at the SCOFF in that regard too. I'd answer it...carefully. As with all questionnaires, what matters is who interprets the answers, and whether the person/a carer is able to give full answers. And the SCOFF is a screen, not diagnostic. In the right hands, it will lower the “index of suspicion”, even if someone technically scores 2 or more.

The problem is that there are not enough right hands. People find themselves under the “care” of health professionals who are horrifically misinformed, not just about ME/CFS, but about how to care for someone with poor oral intake for whatever reason.

I think the kind of document @Jonathan Edwards has talked about could be helpful. Recognition among medical bodies that people with ME/CFS can die if they're not given enteral feeding when they need it, and have died, would go a long way. A protocol to follow when pwME/CFS present with inadequate oral intake would go even further.

Ultimately, I think we’re going to need:
  • research breakthroughs on testing for ME/CFS so that the wrong hands have a test result/combination of test results in front of them that they consider evidence of organic disease (may never happen and unlikely to catch every single person, but would be powerful), and/or
  • research breakthroughs on treatment, so that people don’t end up so sick that they require enteral feeding (may happen)
I'd be surprised if the SCOFF is a major contributor to the awful situation these people are in. Even if it is widely used, it would be superseded by doctors' assessments. If the consultant whose care you're under is convinced you have an eating disorder, and you don't, you're in trouble. A low SCOFF score won't save you. Nor will a supportive dietitian.
 
Evergreen said:
I'd be surprised if the SCOFF is a major contributor to the awful situation these people are in. Even if it is widely used, it would be superseded by doctors' assessments. If the consultant whose care you're under is convinced you have an eating disorder, and you don't, you're in trouble. A low SCOFF score won't save you. Nor will a supportive dietitian.
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yes perhaps you're right
 
JemPD said:
yes perhaps you're right
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And maybe you are. If people who have gone through this get access to their medical records afterwards, they might be able to see if (a) the SCOFF was done, (b) score raised because of their ME/CFS and (c) if undue weight was placed on it (eg if it keeps being mentioned as supporting an eating disorder diagnosis even though dietitian or some docs or nurses are arguing against that).

Doctors like Weir and Speight might also know if the SCOFF is being used against pwME/CFS in these cases.

Edited to add last sentence.
 
Evergreen said:
And maybe you are. If people who have gone through this get access to their medical records afterwards, they might be able to see if (a) the SCOFF was done, (b) score raised because of their ME/CFS and (c) if undue weight was placed on it (eg if it keeps being mentioned as supporting an eating disorder diagnosis even though dietitian or some docs or nurses are arguing against that).

Doctors like Weir and Speight might also know if the SCOFF is being used against pwME/CFS in these cases.

Edited to add last sentence.
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As its a screening tool for suspecting an ED... those questions may be being used covertly eg by some kindly nurse asking the questions as part of a general chat, when the nurse or someone else on the ward (Dr etc), suspects it because they have no idea that "chronic fatigue" can make someone that ill.

IT would seem reasonable at the very least to warn anyone with severe/VS ME/CFS to be aware that they might be asked so that they can be mindful of how they answer questions such as "must be really hard for you, i bet you feel like your whole life is dominated by food dont you?"
 
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JemPD said:
As its a screening tool for suspecting an ED... those questions may be being used covertly eg by some kindly nurse asking the questions as part of a general chat, when the nurse or someone else on the ward (Dr etc), suspects it because they have no idea that "chronic fatigue" can make someone that ill.

IT would seem reasonable at the very least to warn anyone with severe/VS ME/CFS to be aware that they might be asked so that they can be mindful of how they answer questions such as "must be really hard for you, i bet you feel like your whole life is dominated by food dont you?"
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Any health professional could ask any of these questions in an informal conversation, but they could not record those answers on a SCOFF sheet. Would be completely unethical. I think many patients are well aware that they have to be on their guard at all times - it's a kind of "Anything you say can and will be used against you" situation. But no matter what you say, it wouldn't matter if your consultant is convinced you have an eating disorder.
 
From the most recent MEA email:

The ME Association: Diet and Nutrition in ME/CFS and Long Covid

Diet and Nutrition was written by Sue Luscombe, Honorary Diet and Nutrition Adviser to the ME Association

“The ME Association is very grateful to Sue Luscombe for helping to produce this new booklet. Sue is a Registered Dietitian with a wealth of experience improving people’s health and treating illness through diet changes. Her NHS career spanned over 40 years. She has been especially interested in ME/CFS after her daughter, Becki, was diagnosed with the illness in 2002, at age 12. For many years, the family lived with the debilitating fatigue and practical consequences of ME/CFS.”

https://meassociation.org.uk/2024/04/the-me-association-diet-and-nutrition-in-me-cfs-and-long-covid/
 
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Evergreen said:
Any health professional could ask any of these questions in an informal conversation, but they could not record those answers on a SCOFF sheet. Would be completely unethical. I think many patients are well aware that they have to be on their guard at all times - it's a kind of "Anything you say can and will be used against you" situation. But no matter what you say, it wouldn't matter if your consultant is convinced you have an eating disorder.
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Yes you're right about the being on your guard at all times, i know i am.
In terms of the answers being recorded being unethical - yes it would, but so are many things that Drs seem to do with no consequences, & if its a screening tool it wouldnt have to be recorded they could use it in their own minds - well she's answered yes to 2 of these so i'll refer her to the ED service.

You're certainly right about it not mattering what you say if the doc thinks its ED alreayd. I just meant for those drs who are less certain, that they may ask in a roundabout manner. And although if I were someone with eating difficulties i would know to be careful not to say anything misleading, because i've been ill a long time, but some people may not be. Especially young people or people who havent been ill very long
 
I had not been through the BACME document for sever and very severe - at least not this version from March.

I think we have a thread on it and I agree that although quite a lot of it is sensible it veers off the road in the usual places.

I actually think the bit on nutrition is pretty good. I agree that eating disorders do need to be considered and excluded.

One thing that seems to be a rabbit loose is that at the beginning BACME say that the diagnoses need to be made by a doctor. Yet the document appears to giving advice on how you make various diagnoses - for the nbenefit of therapists. That isn't necessarily out of order but it is if in effect the clinics are run by therapists.

I need to marry this in to the document I am preparing. I think that will involve an agreement on the nutrition issues - they are pretty good about sticking to BAPEN guidelines etc. - but also a caveat about the general approach. Which, however hard they try to hide it is to get people to do a bit more and a bit more and...
 
I have just had a surgical intervention for my gastroparesis named G-POEM (gastric per oral endoscopic myotomy), which consists in cutting off a part of the pyloric valve that lets food pass from the stomach to the small intestine. While the surgery went well and was not painful, my digestion has unfortunately not improved — I still feel full for hours after eating barely anything.

It seems like, more so than the type of food that I eat (although fats and fibers slow my digestion even more), I have a hard limit on the energy content (calories) that my stomach can process in a day. It correlates entirely with my ME — this limit increases with rest and goes down when I am crashed.

During digestion, a lot of blood goes into my stomach so my heart rate increases and I get out of breath (I have to breathe through my mouth). I get whole body shivers, and in particular my extremities become cold and pale (Raynaud’s) just like when I overexert myself. I also get a pounding headache that peaks in intensity about 3 to 4 hours after I finish my meal. All of these symptoms quickly calm down once food has cleared my stomach.

Last but not least — worst of all, in fact — eating above the limit that I mentioned causes PEM.

In contrast, I have no issues at all with my nasojejunal / NJ feeding tube (but I had the same issues with a nasogastric / NG tube). It seems that as long as my stomach is not put to work, I can assimilate food fine.

I was wondering if anyone experiences similar symptoms from eating? Although I have been diagnosed with gastroparesis through a gastric emptying scintigraphy, it does not feel like “true” gastroparesis but something that is entirely driven by my ME. (Note: I also have POTS.)
 
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I should also note that when I crash from eating too much, my stomach is particularly impacted. It feels like a heavy brick and digestion becomes even more difficult despite eating the same foods that I normally tolerate (and in the same amounts).

Now that I’m a few days out of the surgery, I tested the waters by eating quite a lot of small soft cakes that I chewed well in one sitting. According to the hospital dietician’s post-surgery meal plan, I should be able to eat normally at this point (and I am totally pain free) but blood still pooled in my stomach for hours, which resulted in a long bout of tachycardia with a pounding headache and a crash with the aforementioned “stomach PEM” today.

I had hoped that removing a part of the pyloric valve would have made digestion easier but, clearly, the problem seems to lie elsewhere. Perhaps it is a combination of impaired gastric accommodation (as documented in ME/CFS) and of GIP activation (as documented in POTS), or just the sheer effort that my stomach has to put in to turn food into chyme and then pushing it towards the pyloric valve, or all of these?

Though I am wary of experimenting with medications, I am interested in giving acotiamide as well as a GIP antagonist a try but I have access to neither. For now, I am left with no answers and a complicated outlook.
 
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A non-ME/CFS case of gastroparesis.

Woman with paralysed stomach told she was anorexic

"A woman lived with a paralysed stomach for three years and was told she might die after doctors wrongly diagnosed her with anorexia.

Luned Davies, 23, has gastroparesis which affects the nerves in her stomach and means she cannot digest her food properly - which led to her dropping down to just five stone (31.7kg).

Ms Davies, from Banwen, Neath, said she "knew" she didn't have an eating disorder, but claims nobody took her concerns seriously after she first started experiencing her symptoms in 2020."

https://www.bbc.co.uk/news/articles/cewl59xyke9o
 
Great to see her looking pretty well, with supportive medication (even if not curative). The article doesn't explain more about any particular cause, which may not be known. As a side note, and as far as we might ascertain from the article she simply improved and looks pretty healthy in the pictures, no permanent deconditioning. She became able to tolerate food much better and hey presto. From —

"I was five stone, you could see my bones. I looked disgusting."

"I couldn’t walk, I couldn't look after myself. My mam had to put me in the shower, wash me, pick me up off the toilet.

"You could see every bone in my body and people thought I wanted to be like that.

"I didn't want to look like that, people thought I had an eating disorder, anorexia."

"Nobody knew what was happening because they could see me eating, but then I was being sick."

"They told me I was going to die, and I wouldn't live through this."
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