UK: Open Letter: Urgent Call for the Creation of an NHS Protocol for Severe Myalgic Encephalomyelitis (M.E.)

"To Secretary of State for Health and Social Care Victoria Atkins MP

I am writing to you as a concerned citizen and advocate for individuals suffering from severe Myalgic Encephalomyelitis (M.E.), urging the immediate establishment of a dedicated National Health Service (NHS) protocol to address the unique needs of this patient population.

M.E., also sometimes known as Chronic Fatigue Syndrome (CFS), is a debilitating complex neuro-immune condition characterized by post-exertional malaise, extreme neuro-exhaustion, cognitive impairment, and other symptoms that significantly impact daily functioning. For those with severe M.E., the consequences are particularly devastating, often rendering them bedbound and reliant on extensive support for even basic activities.

Despite the severity and prevalence of this illness, there is a glaring absence of specific protocols within the NHS to cater to the complex needs of individuals with severe M.E. Consequently, many patients are left without adequate medical attention, facing significant barriers to accessing appropriate care and support. M.E can sometimes be fatal and patients have died from malnutrition as a direct result of neglect, stigma, and a poor knowledgebase in NHS hospitals. In 2024, medical professionals who understand the complex nature of the disease and who contemplate 'off label' treatments are finding themselves at risk of referral to the General Medical Council due to the lack of a NHS protocol."

Rest of open letter, and to sign, https://organise.network/actions/petition-urgent-call-for-the-creation-of-x_s-gvzs/saf/take-action

 

I don't know the background to this but have seen it being shared around on social media.

 

This is needed so much

 

The organizer put out a press release..

For Media Inquiries, Please Contact: Sally Callow, Founder- ME Foggy Dog

Contact – sally@mefoggydog.org

About ME Foggy Dog

We are committed to improving the lives of people living with Myalgic Encephalomyelitis and campaign for better healthcare outcomes for affected individuals. Visit mefoggydog.org to learn more about our work and how you can get involved.

https://www.mefoggydog.org/2024/02/13/press-release-open-letter-to-secretary-of-state-for-health-and-social-care-victoria-atkins-mp/

 

There appear to be multiple patients in extreme physical danger dealing with NHS failures right now.

Someone is reporting on Phoenix rising about a teenager who is unable to eat or drink and is no longer responsive being denied care and advised to do Get. Am I allowed to link to PR?
https://forums.phoenixrising.me/thr...r-articles-on-me-about-to-be-published.91562/

there is also this report on Twitter about Maria Louise Williams:
https://twitter.com/user/status/1756698970099781707


And the case of 37 year old Karen Gorden.
https://twitter.com/user/status/1757438812374945822

 

I see this as a mistake. It probably will get no traction but I think it is muddying the waters for PWME.

We have a protocol for ME, in as much as it is possible to create one. It is the NICE Guideline that a lot of people put a lot of hard work into. There are no other ME specific protocols to be had because we do not know what is beneficial and what may be worse than useless.

Nobody understands the complex nature of the disease. Honest folk admit they have no idea. Contemplating 'off label' treatments is the last thing we need. It will include contemplating the Lightning Process, dangerous immunosuppressants with no good evidence base, and goodness knows what. It is no earthly good trying to get the health system to block treatments from the BPS side without good evidence if they are then encouraged to allow treatments without good evidence.

Encouraging PWME to think that there are medical professionals who somehow know magic treatments for ME seriously worsens the distrust between patients and the system. We need PWME who cannot eat to be given adequate supportive care but what is needed is generic supportive care unrelated to a specific ME diagnosis. Just the care that other people are getting, not something special.

 

It is and I’ve seen it on social media

I think it would help to have alongside it some detail so that people know WHAT they are asking fir in it. And the source so that is well-explained (those who aren’t severe might need it explained what you need when you are and how peoples attitudes are - because it is wayyyyy worse vs the ‘fatigue’ they’ll patronise you with when they think it’s ‘cfs’ vs severe ME that doesn’t exist and there is no sidestep fir them)


Everyone agrees ‘something has to be done’

we just need to be reassured, so we aren’t divided and signing different things, that those most qualified and experienced have put together the WHAT that looks like and described it so that we can all talk to summarise and understand it if asked

 

These sorts of statements, not backed by any evidence, do not portray us in a good light.

No off-label treatment has ever been shown to have efficacy. Therefore, it’s good that the GMC makes it difficult for practitioners to harm our patient population with quackery.

Having said that, our colleagues with severe ME are still in danger of dying NHS hospitals due to lack of supportive care (which has nothing to do with any quack off-label treatments, just lack of common sense supportive care). Having a diagnosis of ME means that the patient is denied supportive care because NHS staff think that any practical supports like tube feeding and mobility aids are feeding into false illness beliefs and fear of eating/refusal to eat. People are continuing to die in NHS hospitals even after the new NICE guidelines. Something must be done to stop this but I don’t think this petition is a good way to go about it.

 

Just as basic questions. Because I think it is time these things spelled out the situational context more specifically, and got across e.g. 3 options as solutions type thing (to address that different trusts might have different ways they plug the gap). I can't be the only one who finds this whole thing coming round continually horrifying and confusing. What's making these people unsafe, and what would make them safe(r) shortish term not in theory but in actual practice?

I don't know enough about what these things ask for when they are just generic and seem to be saying 'can the same place that won't please do it' although I get the sentiment. And I also have a horrible feeling its being left down to the people in this horrific situation as the only ones trying to communicate something so complicated and hard to solve, whilst they do all they've got on?

What staff/resources are the component parts generally required/missing in these cases that need to be somehow put into place or better ensured?

And if we went down these as a list is the issue e.g. that there aren't people who have the skills to do the tube or is it that they won't

There seems to be a common theme where hospitals are getting the advice, and then ignoring it.

Which does mean that things have been at a level for a long time where they are beyond urgent and into the incorrigible.

But what are they asking for that will work?

I don't know how trusts work but imagine you could have combinations of needing safety officers guarding patients in hospitals who are made responsible for the outcomes and access. Ones who have heft.

And do we need training of remote teams who can go into hospitals and teach the whatever team to do the tubes and care if they claim a 'can't' or don't seem to be able to?

Or just that we don't really have many people qualified to severe and very severe ME, so they get to quibble about that instead of being required to build up a bank of those who are suitably qualified and follow a programme in the mean-time where those who don't have that expertise are suitably trained in what they need to know? And required to take responsibility properly for the patient and their outcome in line with that. Some sort of protocol leaflet for the noise/light/exertion etc needs, and require all hospitals to submit whatever plans to show how they'd provide this in such circumstances?

It definitely feels like a back up to this is that we do need nationwide community nursing teams that can stop people getting to this stage and who are proper ME-specialised. I don't get why this couldn't be a campaign/as an ask if well-explained as something that would transform x or y?

I'm spinning a bit here with feeling I'm seeing utterly urgent things just going around in circles

What combination of things is it that is needed as a 'want list' that could logically add up to say currently this is what is needed to be able to ensure people like this are safe. Because it feels without more substantive 'bits' then the idea of 'convincing people' and leaving hospitals to pretty please have a word and sort it isn't going to happen. Even if those words sound stronger.

What is it that actually would work that all charities and patients should be asking for?

I mean is it really that we have a set-up in the UK where within healthcare stigma can cause people to do/not do things to individuals they know might result in likely death, - cowardly disguised behind a group of people pretending 'can't' or 'don't know how' or 'didn't realise' when they know full well? And there is no accountability beyond the organisations backing them up who are not stepping in.

Nothing hugely different to if it were any other minority walking in and being refused or mistreated to this extent merely because of who they are, other than some little silly story that makes no sense being allowed to be used as justification (ship em under a psychosomatic anything and you're covered right?) ? Or is it because there isn't a list of dos and don'ts it allows for this free-for-all?

Or is it really still a gap in information and guidelines or pathways or what?

I'm struggling to get someone to articulate precisely what is missing here that is meaning obvious care isn't being given, and feel convinced when I read something that it will actually be a fix to it

 

If I was a medical professional I would probably refuse to take seriously an organisation called "ME Foggy Dog". Why would anyone want to name an organisation for very sick people after what I'm guessing is a pet dog?

 

Be careful what you wish for. Demanding anything of health services for ME has gone horribly wrong so often.

 

I think it’s clear more has to be done. the NICE guidelines have existed for some time, they are not stopping disbelief and harm and really why should a two? page chapter substitute the expert care others get. I assume when foggy dog started it was based around a fundraising dog and not supposed to be leading advocacy but if the cap fits.

The NHS needs more written material around severe ME and preferably some drs compelled to develop expertise, provide care and offer guidance in the situations where profoundly Ill people enter nhs care and drs have never seen anything like it, nor are they given much nhs approved written material that explains it more to overcome the prejudice we know Is out there.

I received validation in my tube feeding issue years ago, mainly through having an nhs m.e consultant advising throughout. The numbers around are probably less than 5 nOw, i’m not sure why those that do exist, for example the dr featured on channel 4 are not called on.

 

This is the problem.

I haven't really changed my mind about my reservations about this Open Letter but at least for the minute it looks as if it may be me that is trying to provide some sort of draft protocol.

I have been talking to most of the relevant people and will talk to more. Interestingly, perhaps the most relevant person, who might be expected to suggest some additional protocol detail has indicated that they think the NICE Guideline says what can be said and that the real problem is that people with ME/CFS are not being diagnosed with ME/CFS. That is the main reason why they are not getting adequate care. There is no problem about knowing what to do. Adequate nutritional supportive care is the same as for any other situation.

All the relevant people in the UK you can think of are thinking about this problem and having meetings to discuss what to do but nobody has any idea what needs saying - beyond the NICE Guideline. But I think there may be something useful to say and I am working on that. The aim would be to have a model protocol available by about the end of June, accessible to everyone and freely open to published comment from everyone.

 

Thank you

 

Thank you, Jonathan, for trying to take this forward. I agree with your stance on the likely helpfulness or not of this open letter and that the current NICE Guidelines undoubtedly say what can be said on this, given the current state of our knowledge on causation.

I can also attest from personal experience of my late wife’s case, that what your ‘most relevant person’ identifies as the main issue ‘not being diagnosed with ME/CFS’ is in the right ball field, but needs I believe, further unpacking given our own experiences.

My late wife had a long established (1991) diagnosis of PVFS/ME of physical causation from Dr Weir. She shortly after developed severe food and chemical intolerances and was referred by Dr Weir to Professor Brostoff who confirmed the PVFS/ME physical diagnosis but added Food and Chemical Intolerances of unknown physical causation as a recognised complication of the primary diagnosis PVFS/ME of physical causation. This complication added considerably to the difficulty of living with PVFS/ME as like with ‘Effort Intolerance’ the only management technique for dealing with ‘food and chemical’ intolerances were to identify them and limit exposure to them.

This was extremely difficult to do, but with help from Professor Brostoff’s team which included a nutritionist, exclusion and challenge exercises were undertaken to identify the worst culprits and they were removed. It was also established that exposure to any food or chemical on a daily basis quickly led to that food or chemical being sensitised to. Further investigation established that tolerance was largely but not totally maintained if foods (and chemicals/ medicines) were rotated on at least a 7-day basis preferably on an 8 day basis.

Needless to say this resulted in a very restricted and difficult diet to obtain, but we ensured it met the nutritional need and it kept my wife alive for a further 25 years and importantly, well enough to enjoy some quality of life. As with PVFS/ME regular setbacks/downturns occurred and the identification and exclusion of foods and chemicals (which included all medications on any regular basis) had to be repeated.

Throughout her life with this illness our biggest difficulty was not getting a diagnosis of PVFS/ME or ME/CFS or CFS but recognition of it as an illness with unknown physical causation. Much more often than not other medical authorities we encountered in different situations applied a psychological attribution to the causation and tried to treat accordingly on the basis that her physical symptoms were not real ie she could undertake exercise, eat and drink normally and tolerate standard medical protocols for the relief of pain etc.

The problem was not the name given to the diagnosis but the perceived causation held by the Doctor giving the diagnosis and their willingness to respect my late Wife’s ‘competence and right to choose’ her medical treatment. Far too often, most especially in Hospital situations including end of life care, the Doctors did not respect my Wife’s expertise in managing her illness or the ‘physical causation’ applied to her full diagnosis of ME/CFS with Food and Chemical Intolerances. Even when provided with written evidence of continuing care of ME/CFS etc as a physical illness at Consultant level they chose to ignore that, without explaining their reasons for doing so.

Our protection, such as it was, was to invoke the law around ‘informed consent’ directing these other Doctors to 2 legal judgements. The first of these concerned the need in law for Doctors to explain the evidence on which they relied to substitute their own diagnosis over a pre-existing diagnosis and the second which confirmed in law the ‘competent’ patients right to choice ie the right of the patient not to undertake any treatment they did not want and to have all medical views and risks associated with any and all views of their illness explained to them.

My late wife was always, ultimately successful in obtaining her treatment of choice, especially when we actually had to go to law. This was because of two factors. First the historic primary physical diagnosis of ME/CFS predates the later psychological attribution to the illness and second we found that in legal settings the psychological view was unable to explain or point to any evidence which supported that view, whereas the physical causation could. Third party independent legal judgements in our experience always dismissed the ‘psychological view’ of ME etc as being unsubstantiated when the physical causation of ME had also been diagnosed and presented.

You are quite right to point out, in another related thread, that the new NICE ME/CFS guidelines have now adopted/adjudicated the medical and legal validity of Medical Professionals recognising, diagnosing and treating ME/CFS as a primary physical illness of unknown causation.

Unfortunately, our individual success and in my raising of it with the GMC and other medical bodies has not yet changed the diagnosing and treatment behaviour of those Doctors who continue, without evidence, to attribute a psychological causation to ME/CFS and in certain situations seek to remove the patients or their guardians right to ‘informed consent’ and ‘choice of medical view and treatments’.


I wish you well in your efforts to develop a protocol as although (like the new NICE Guidelines) it may not be implemented by all Doctors it will add a very important something for the patient to ask for. Please PM me if you think any further information on our personal experiences may be helpful to you in your efforts.

 

Thanks @tuppence
Apparently I am not allowed to start a conversation with your address?
I am interested in the legal cases.
Can you set up a conversation?