United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media

I think the NICE Guideline may be able to provide a basis for a fairly solid argument to use in cases if inappropriate care.

The NICE Guideline laid down the evidence base for ME/CFS and also the scope of the diagnostic label. It provides a consensus on the available evidence on which to base care. Part of the problem for people with feeding problems is that the guidance does not give detailed advice, largely because there is no specific evidence. However, the flip side is that the lack of evidence base described for ME/CFS in general can be understood as extending to this situation.

What I think can be argued is this:
Someone who has severe exhaustion and intolerance of exertion and environmental stimuli, including eating and drinking, without evidence of some other specific cause can be classified as having severe ME/CFS. NICE has now established that there is no reliable evidence for efficacy, in this group of patients, of treatments that involve challenge with stimuli - such as GET. There aren't even trials for efficacy of deliberate exposure to light and sound, withdrawal of carer access etc., and this being the case any use of these treatments against patients' wishes is unethical and an abuse of personal rights.

Prior to the 2021 Guideline it could be argued that treatment for such patients could reasonably be based on an extension of the general principles behind GET and CBT - stimulus challenge. That has changed. The situation has also change because the new Guideline makes it clear that a group of people exist within the ME/CFS category who have these problems. That may not have been so clearly recognised in the previous version.

It is presumably possible for hospital staff still to make an alternative psychiatric diagnosis but I think under legal challenge it might be difficult to sustain. Very severe ME/CFS is now a well documented clinical problem category. It is not anorexia nervosa. Categories such as paranoid personality disorder presumably do exist but I suspect that their usage is marginal.

 

Rare variant, whole genome sequence studies, look for low frequency (rare) variants which greatly increase risk of getting the disease (including risk of more serious illness) - I don't think there's been a large rare variant whole genome sequence study.
If you're thinking of DecodeME ["GWAS" study] then that's a common variant study - these increase your risk to a lesser degree. These studies look at a % (10%?) of the genome.

The two studies [GWAS & rare variant, whole genome sequence studies] can both be useful - so if DecodeME doesn't identify cause then potentially a rare variant family study may do.

I have a limited grasp of this - so I generally check the web - here's an example of an explanation of these different types of studies* - Simon McGrath's blog are a better place to start though!


*
"Most common variants have only small to modest effect sizes, which increases the difficulty of dissecting their functions and restricts their potential clinical application. Intriguingly, many studies have indicated that rare and low-frequency variants have larger effect sizes and play more significant roles in susceptibility to common diseases, including T1DM, than common variants do. Therefore, better recognition of rare and low-frequency variants is beneficial for revealing the genetic architecture of T1DM and for providing new and potent therapeutic targets for this disease. Here, we will discuss existing challenges as well as the great significance of this field and review current knowledge of the contributions of rare and low-frequency variants to T1DM."
https://jmg.bmj.com/content/58/5/289

 

But there is evidence of young people with very severe ME and feeding problems dying. I don't know whether any academic case reports have been published; if not, perhaps it'd help if there were.

 

Yes, and published.
The lack of evidence is for treatments.

 

I struggle greatly to follow it myself, to be honest, not ever been an interest of mine. Is that why Ron Davis' at Stanford study was so small, or am I misremembering. Because if I grasp what you're saying (and I'm only running on adrenline only at the moment) have the MRC and NIH taken us for fools as well? Bit like the PACE trial largest study in the world on ME/CFS. Because even that's not 'parity' is it now, certainly not in costs, nor in volume of research projects. Both government departments and it's it's arms length bodies are required to follow not only the Equality Acct 2010, the ECHR and the UN protected characteristics and are required to apply positive discrimination in order to level up the playing field on rights for the disabled.

If there is going to be a new approach, I think we may have to find a whole new language "Postviral fatigue syndrome: time for a new approach | The BMJ"

BBC Horizon programme 1988 Chronic Fatigue Syndrome.

 

Actually, yes--I forgot about Thane's case. I wrote about it while it was occuring, and I think Lubet did also. It didn't get to the extremes of these ones, I think.

 

There is no excuse for a protocol not have been written in the last 18 years! That is a choice. It was also a choice to try to section her mother who, if my memory serves correctly was a nurse herself.
Sophia Mirza - Wikipedia

ETA8 Apparently, the professional governing bodies to whom Criona Wilson worte including practically everyone in Govt, she got absolutely nowhere even with the post mortem results.

What ou are witnessing from me now is PTSD and if you think another hubris filled gasbag from that profession is coming janywhere neear me again, you must be taking your own drugs.

 

So at least there's evidence of the harms of lack of treatment. It's not the same as evidence for one approach over another, which I guess is what hospital doctors need, but it's a start.

Next it needs someone to view looking after one of these young people as a privilege and an opportunity to learn.

 

As per my post above, I'm not aware of a (large/large enough) rare variant study i.e. by Ron Davis or anyone else. NIH - we'll perhaps know what they're going to fund soon - next month? MRC - funded DecodeME - you'd need to ask someone above "my pay grade" re whether they'll/they have plans to fund a rare variant study!

 

I'm struck by how I've missed the point here i.e. impact of light, noise etc. [stimulus] on those severely ill with ME/CFS - particularly when they are severely ill and hospitalised to receive essential treatment. Can they receive nutrition (stomach tube or other) at home?
I'm guessing that the coroner should highlight failures and recommend appropriate treatment in future cases - has that happened? Is there another route i.e. if the coroner doesn't highlight issue?

 

Except that it may not be quite so simple.
At present I do not know how well people do if they get enteric feeding. We know of one or two people who have survived years but each case may be different. We need data.

I does seem pretty clear though, that if people are starving to death and services refuse to provide supportive care in a reasonable fashion that the natural history is such that the person may die.

 

This It's just basic common sense that if someone is starving to death because they can't swallow/keep food down, you give them parenteral feeding. It doesn't matter what illness they have. It's not rocket science. Anybody working in a hospital who can't figure that out, really isn't suited to the medical profession and should take up employment elsewhere!

 

Sadly Decode ME is not looking at family links ( at this point in time )
Given the many instances of it running in families I hope this is something that a genetic study could look at in the future

 

You could if you had the right system, but I suppose the problem is that no one's sure what that is. PEG tubes seem a good option for people who've lost the ability to swallow (a family member had one), but you still need a functioning digestive system.

 

There seems to me a relatively clear hierarchy, of nasogastric tube for a relatively short term solution to eating/swallowing issues, then the various PEG tube options for more long term issues (note, PEG feeding does not, if appropriate, preclude some oral feeding), then if there are still issues with the functioning of the digestive track below the stomach or the duodenum the final option is to provide nutrition via a central line directly into the blood system.

If someone is experiencing malnutrition, for whatever reason, with oral intake failing, it seems to me relatively straight forward to start exploring this hierarchy of alternatives, all of which are reversible if oral intake subsequently becomes possible. (Added - Obviously medical teams able to address these options and provide appropriate continuing care are necessary, but most if not all Health Authorities have staff perfectly able to address this for other conditions, so why not ME/CFS.)

 

I'm not surprised that DecodeME "is not looking at family links ( at this point in time )". If I recall correctly, the NIH expert panel*, which included Chris Ponting (DecodeME), strongly supported a rare variant (whole genome sequence study) focused on families - as per my post/s above, we'll have to see whether NIH, or indeed others, actually fund one!
"I hope this is something that a genetic study could look at in the future" - I agree

*NIH genomics webinar

 

https://twitter.com/user/status/1779087371675242842

 

The problem with X is that if you don't use it there is no access.

Not sure what Valerie ES is suggesting.
Or where money comes in to it.

 

2/ There is already a small informal group that assists in cases such as Millie's and they do brilliant work. However, my proposal would be for an expanded team with a formalised structure which could carry out rapid responses when necessary (DoLS, sectioning, safeguarding etc.).

3/ The team would consist of a network of medical, legal & advocacy ME specialists coordinated by an admin team. There shd be proper funding made available for expenses plus fees for the involvement of local specialists where necessary. NB Anything worth doing WILL involve costs.

4/ The historical shortage of experienced & knowledgeable experts is a problem & needs to be addressed urgently. However this cd be partially mitigated by forming networks of local experts, particularly for legal issues (medical ignorance is separate issue too long to cover here)

5/ The loading on the current informal group has been grossly disproportionate. It needs a complete overhaul & update. However, this cd only happen using existing infrastructure of the recognised ME institutions & with their public endorsement + publicity around any new system.

Previous thread

#BringMillieHome
1/9
There has been much recent media coverage/discussion about the case of Millie McAinsh. Millie is a young woman who has been diagnosed with #SevereME. She was admitted to the Royal Lancaster Infirmary some time ago as she was unable to ingest/digest food.

2/ The 2021 NICE guideline for this illness references the need for tube-feeding in cases such as Millie's. However, #ME, especially in its severe form & particularly in young women, is an illness which inhabits a world of widespread cultural and medical ignorance and prejudice.

3/ As a result, Millie & her family are being subjected to a nightmare set of circumstances all too common in this kind of situation where the illness is not given essential life-saving credence/treatment.
NB: my knowledge of this case comes solely from public social media posts.

4/ So what needs to happen now? According to social media, Millie is subject to Deprivation of Liberty Safeguards (DoLS). IF this indeed is the case, then the route for appeal is to the Court of Protection. Legal advice/representation would be required.

5/ Apparently, Millie/her family have a lawyer although it's not clear for what purpose. It is to be hoped that it is someone familiar with ALL available legal options and with the challenges faced by far too many patients like Millie with #SevereME


6/ Beyond this case: the #ME charities shd use some of their combined reserves to fund & set up a crisis team for just this kind of situation which happens all too often. Yes it would be quite a complicated process but it shd have happened years ago (it's a mystery why it hasn't)

7/ Bigger picture: it must be accepted that the international #ME patient community has yet to change an entire culture and worldview. Fighting individual fires (such as Millie's) does not change entrenched attitudes and prejudices in populist/media/medical cultural thinking.

8/ Like many before me - and, no doubt, many yet to come - I am utterly disheartened/burned out by years of trying to address this problem. However, a summary of my thinking & proposals for tackling these issues is in the link below.

9/ The above proposal for a charity-funded crisis team should be considered (or reconsidered, if they have previously done so) by a collaboration of eg. @MEAssociation @actionforme @MEActNetUK.
#BringMillieHome highlights the need for this yet again.
Thank you for reading. END