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

Re: Steve Topple piece

If we protest or complain this often has a negative effect on people's perceptions of "the community" i.e. ME patients as a whole. It's unclear that any protests would have a positive effect either on the medical profession or the general public due to the false narratives, beliefs, and lies that are already out there about us. Patients protesting and complaining would just be seen by many as further evidence of how "difficult" "these people" are, etc.

To be clear, I do think there should be protests and actions - they just need to be thought through correctly in terms of what they are hoping to achieve and who the intended audience is. But if there had been a lot of actions in the past when a lot of these narratives were more easily accepted I'm sure they would have just strengthened the position of those who compared us to terrorists and animal rights activists. We are at a different moment now in being able to reach people, as these kinds of narratives are harder to maintain and control mainly due to changes in culture and social media's ability to directly reach people with no or little intermediary.

In any case, most of us are completely unable to go and protest. Perhaps those more mildly affected could be criticized for appearing to "turn away" from a group of people they may or may not know exists. Often I have noticed that they also believe that "these people" (i.e. longer term patients who are more severely affected) are miserable people who don't really want to get better and have a poor attitude. I know that some people are told this by practitioners and by other patients who sometimes identify themselves as "ex ME" sufferers. It's a confusing landscape for ME patients and there are many factors that cause a potential lack of solidarity between the differently affected patients - but in general they are all the victims of the nonsense that has been put out there about us by authorities and "researchers" over the years. We are all just sick people trying to live life and potentially get well.

We are also not able to go out there and risk being arrested or detained as a result of any actions. It is not like what happened with ACTUP and so on. I do believe we need to build solidarity with eachother, other disability groups, and non-disabled allies. It's the only way. Blaming "the community" is a view which lacks context and a deep understanding of both the effects of the disease on patients physically and the power dynamics that got us into this situation - the epistemic injustice, the attitude from both authorities and the general public - in the first place. This was historically and is still something that is being actively carried out to basically lock us out of "the system" and away from sympathy, medical knowledge of our illness and condition, at others' convenience and to further their own agendas, and so on, and fighting that requires a different approach.

I appreciate the coverage of the predicament ME patients find themselves in, but it is disappointing to read more patient-blaming in this story in which a lot of extremely sick and disabled people have been blamed for their own ill-health and predicament by most people they come into contact with. I hope more can come to understand the context that we were just supposed to go away; it's the same dynamics you see now in the attempt to bury Long Covid, so people have the chance to see it happening on a mass scale in real time.

Thanks for reading. I hope anyone affected by these terrible stories of mistreatment by authorities is okay. It's awful and terrifying to hear about and witness. xo

 

https://twitter.com/user/status/1777637343773561187



Julie Houston
@JulesAHouston

This is a big day for Millie & her family. In addition to the Twitterstorm at 11am, there will be a protest outside the RLI & her story will be covered by @ITVGranadaTV
Very grateful to @JoshuaStokesITV Big thanks also to @NickyProctor @juancorlett who made this happen.

10:59 AM · Apr 9, 2024

 

https://twitter.com/user/status/1777638300276187405


ME Association
@MEAssociation

Dr William Weir and Dr Charles Shepherd are both involved in helping Millie and her family. The ME Association shares the Secretariat for the APPG on ME with Action for ME and we support the work of the APPG and its upcoming focus on severe ME. The group will be reviewing the lack of specialist care available to people with severe ME and identifying opportunities to improve the availability of support. #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #BringMillieHome

11:02 AM · Apr 9, 2024

 

"The [APPG] group will be reviewing the lack of specialist care available to people with severe ME and identifying opportunities to improve the availability of support"


When exactly? That should have been done decades ago. How many more young women with severe ME with dire feeding needs will have been medically neglected by NHS hospitals, and/or wrongly sectioned, denied vital feeding techniques by Drs determined to ignore the latest NICE Guideline, or actually die .... by the time the APPG gets round to reviewing and reporting?

Really, this is no time for a leisurely stroll.

 

Fantastic to hear that ITV is going to cover this. First Channel 4 News recently did two pieces on the true reality of ME, and now ITV! So great to see mainstream TV news channels finally reporting on this serious ongoing horror.

 

Trial By Error: In England, Conflicts Between Families and Hospitals Threaten the Lives of Young Women with ME

ME patients and advocates in England have been alarmed by a series of ongoing cases in which the families of severely ill young women have struggled to convince hospitals to fit them with feeding tubes before they starve to death. I covered a similar situation last year in a piece about the life and death of Maeve Boothby O’Neill, who died at 27 in October, 2021, after failing to obtain the care she hoped for at her local hospital in Exeter.

But recently other cases have gained attention. The most dire at the moment is that of Millie McAinsh, a young woman from Lancaster. Her situation was highlighted in a change.org petition, a fundraising appeal, and harrowing accounts in The Canary on March 8th, Byline Times on March 19th and The Mirror on April 4th. The latter, by Mirror deputy online features editor Elle Fry, starts like this:

“A hospitalised teen who is unable to walk, talk or eat fears she is going to die because doctors don’t agree that she has ME.

“Millie McAinsh, 18, says she suffers from ME that is so acute that she can’t walk or sit up and struggles to speak or swallow. Even the smallest sensations like touch, noise and light unbearable, as her sensory hypersensitivity leaves her in agony.”

https://virology.ws/2024/04/09/tria...ls-threaten-the-lives-of-young-women-with-me/

 

ITV piece on Millie situation aired tonight. Local news I think.

https://www.itv.com/news/granada/20...al-over-medical-treatment-of-18-year-old-girl

 

Interesting to see David's piece nicely summarising the situation. We talked about this on Sunday.

I may upset some people but my advice here would be for Action for ME and the APPG and everyone else to stop talking about severe ME and talk about severe ME/CFS.

We hear that hospital staff say they do not believe patients have ME or that ME exists.
I have sympathy with that to the extent that I do not believe there is a single 'multi-system disease called ME'. There are about 100-200,000 seriously disable people in the UK suffering from a specific clinical problem recognised by NICE and the research community as ME/CFS. There are guidelines for ME/CFS. The patients fit the criteria for ME/CFS. They have to be treated as severe ME/CFS.

Rather than a self-advocacy pack on ME what I think is needed is a supplement to the NICE guidelines on ME/CFS that carers can present to health care professionals. It needs to come from a medical consensus that includes people expert in management of feeding problems and people with knowledge of ME/CFS. Not from a pressure group, however high-profile. And it is needed now.

If I was a health care professional sceptical about the concept of ME I would see a self-advocacy pack on ME as a red rag to a bull. If I was presented with a NICE supplement I would not. I think it is important that community politics do not threaten to reduce further the chances of people surviving in very difficult circumstances.

David and I discussed why it might be that we do not hear of cases like this in the USA so much. The same conflicts do not seem to occur. Maybe we are screwing things up over here in a way that we do not realise.

 

https://www.youtube.com/watch?v=lA6zTRf38ek

 

That's a remarkably good idea.

I think it's probably attributable to the structural differences between our healthcare systems. In the US there are major medical centres affiliated with reputable universities that apparently treat patients sensibly, like the Stanford one. There are also various ME specialists of varying quality who work in their own private practices but who have admitting privileges at different hospitals; some of these will undoubtedly have relationships with gastroenterologists sympathetic to requests for enteral feeding. None of this is the case in the UK; the very few doctors who regularly treat patients with very severe ME and do so sensibly are in private practice without major institutional affiliations.

Also, the general healthcare culture in the US, for all its faults, is far more consumer-oriented; by contrast in the UK there still persists the attitude that the patient should simply be grateful for whatever they get from the NHS.

When I developed similar problems I sought out the advice of a couple of neurogastroenterologists privately (I didn't want to be left at the mercy of my local hospital's gastroenterology department if things happened to progress to the point where I needed enteral feeds). If I recall there are a couple of specialist NHS neurogastroenterology centres & specialist motility disorder clinics; perhaps someone from one of those services might be interested in helping to develop such a supplement? There is a desperate need for both urgent action but also for pragmatism to prevail in how these cases are treated and managed; it is, after all, potentially a matter of life and death.

 

Thanks.

That was our thought.

Including a wondering about that.

 

To me the simple answer is that it has been very hard to get a diagnosis of ME or CFS or ME/CFS or CFIDS in the US whereas in the UK there have been national guidelines that doctors and clinics follow and issue a diagnosis of ME/CFS. There have been no more ME/CFS specialist doctors in the US vs UK on a per population basis.

Most doctors in the US I saw before diagnosis did not believe in CFS and always attributed my problems must be something else.

ETA : Kaiser Permanente, a health system in the US, has 12.5 million subscribers. It does not have an ME/CFS specialty, or properly recognise ME/CFS.

 

We are dealing with levels of prejudice, @Jonathan Edwards, that ends up with HCPs/Drs refusing to examine or treat broken bones in an ME (or ME/CFS) patient in A&E - because they are so brainwashed and crazed to gaslight and deny physical reality. REAL case, Brighton A&E 2002, broken and displaced rib, sticking out of the patient's chest, couldn't be missed if they'd actually have even visually LOOKED at it!. They persistently REFUSED to even look at it! In their mad minds it didn't exist.

Those HCP/Dr nutcases didn't care what the disease was called - they were crazed/mad and high on disease-denial, escalated to injury denial. The doctor was virtually preening himself, he was so pleased with himself, he thought he had a subhuman female hysteric under his boot, eventually pronouncing "You have muscle strain, you can go!" - he had REFUSED to even look at the very obviously broken bone!

They cannot be reasoned with - they no more respect ME/CFS than they do ME. They have no limits to their denial of physical reality.

.

 

A few other thoughts:

Patients could also be being diagnosed differently (looking occasionally at social media, I've noticed a number of "EDS-III gastroparesis" diagnoses in the US, which you don't often see in the UK.)

The US is also a more litigious society. The kind of actions seen in the UK might well result in tens of millions of dollars in awarded compensation in the US. That may strongly disincentivise certain forms of negligence.

I suppose we should also consider the possibility that there are simply fewer of these cases in the US than in the UK; that there is some factor that results in fewer gastrointestinal issues developing, or that something else in their clinics' management of ME results in fewer cases progressing so far (use of/earlier treatment with prokinetics, perhaps?). I think it's unlikely, but nonetheless, it is perhaps worth considering that for whatever reason we're getting more of these cases in the UK.

Wondering what the picture looks like in other European countries? (We really need much more epidemiological data & studies for ME.)

 

I was thinking along these lines as the reason for the issue in the UK being nothing to do with patients specifically, but didn't know the details of how the US systems works as an overall so interesting to hear. I also wondered about the difference in personal liability in the US vs UK systems , including if it is just the GMC in the UK and is there a difference between whether the whole hospital stands behind a drs decision vs if it was just tactfully moved to someone else in different systems. I've also seen another issue being that there is no other place to ask to move to, which means it must be cultural in the UK NHS / basically set up so there is nowhere. And a system where there is no alternative for these things also because the private system is quite different due to the NHS being there for certain things, so private having gaps that another country's health system wouldn't etc?

I'm intrigued and this is something I don't know for either system: does the head of dept in a UK hospital rule the roost and would it be hard if someone else in that dept disagreed /was prepared to actually do anything different eg if they decided it wasn't real, along with hierarchy across depts if a psychiatrist has a strong view? Vs I don't know how it works in the US either?

EDIT: it helps to know your audience/decision-maker and what/who their concerns may or may not include?

Of course it is interesting because I say private but I guess in the US it is health medical insurers on the whole ?

 

I am not sure that this would work the way I think you are suggesting.
If someone is ill enough to need tube feeding or gastrostomy then it doesn't matter what diagnosis they have, they are ill and need help. In the UK these people are ending up being mismanaged. The worry is that their mismanagement is made worse by having a diagnosis.

There are actually almost no 'ME/CFS specialists' in the UK. There used to be Amok Bansal and Saul Berkovitz but I am not sure either deals with ME/CFS now. Most patients get diagnosed by a GP, most likely mostly with chronic fatigue. Some get to therapist-run rehab centres. There are two retired physicians in the UK who have a special interest in ME/CFS but both probably always refer to it as ME. The NICE guidelines exist but there is almost nobody to actually deliver them as intended.

It may be that people with very severe ME/CFS in the USA are getting gastrostomies or being treated as psychiatric or whatever but we don't seem to have any information on that. If they are being managed well and improve enough to manage without feeding support we all need to know how it is being done. The problem in writing some guidelines in the UK is that nobody seems to have any idea what successful treatment looks like.

 

At one level I agree. But I also think that the situation is made much worse by talk of 'ME'. ME is the diagnosis that was supposed to be fictitious, and in the sense that it was linked to an epidemic at the Royal Free I think it was fictitious, but CFS is not. The use of ME/CFS makes it clear that this is a pragmatic clinical category, not some imagined disease that one can believe in or not.

This post has been copied and subsequent posts on naming have been moved to
Diagnosis of ME and the use of the labels ME and CFS.

 

In the US there is variation in capabilities and standards (including variation offered by ability to pay) rather than the monolithic NHS standard. Also things may just not be as visible, because a complaint in the US is often handled via the legal system in a particularly state, not featured on national television.

PR has a related discussion thread titled: "Please sign the Petition to help save Karen Gordon's Life". One of the posts describes a member in a similar situation. I won't quote here, but you can follow the link to that public thread.

 

https://twitter.com/user/status/1777644443111231968




Etta Loveday
@EttaLovedayME

Update about Millie Petition https://change.org/p/save-millie-s-life-royal-lancaster-infirmary-must-stop-causing-millie-harm… Fundraiser https://justgiving.com/crowdfunding/bake-mecfs-formillie… #BringMillieHome #MilliesevereME #SevereME #pwME #saveMillie

11:27 AM · Apr 9, 2024