UK Government ME/CFS Delivery Plan (includes Attitudes and Education Working Group and Living with ME Working Group) and consultation

[Tilly]

My first draft of the letter to all

Excuse the round robin approach but as you can appreciate time is short and my caring responsibilities increase at this time of year.

I have been an advocate for those with ME and PEM for the last 10 years. I was involved in the new NICE guidelines and the NHS development of the delivery plan. Sadly, those with severe ME and PEM lose their voice because they are unable to spend the energy needed to engage. They have; by and large been mistreated by those that should have understood and protected them, as you can read in the link below.

Yesterday I received this in an email regarding the NHS interim delivery plan on ME/cfs

https://www.gov.uk/government/consu...ll-reality-the-interim-delivery-plan-on-mecfs

I hope that SNEE, give the opportunity for those voices to be - not only heard but acted upon and it is up to us all to grab the courage needed to support those voices, uncomfortable truths need to be addressed.

I will be writing to individuals in the new year. This, however, will be an open letter so that the community can comment on it and take steps as they are able or ask me to take steps on their behalf.

The most important part is the sighted research and papers, explaining the horrors of this illness. Please take note that all services and the education of professionals need to understand this disease, should start from this baseline sighted papers then grow and be supported from those that have the lived experience. We need to build bridges and communication with reasonable adjustments to enable change.

Funding for ME has, as I understand it been there, but has been filtered away from meeting the need for tests and treatment for those with ME and PEM. An unwillingness to use the correct survey questions such as do you have OI, POTS, Mast Cell or have you been denied these tests and the use of the SNOMED codes. These questions need to be in the open so that the forward plan meets the physical and safeguarding needs of these patients.

There has been an unwillingness to support those doctors that understand the need to test for OI, POTS Mast cell hEDS, EDS all of which are known to be involved with the decline of those with severe ME. Without this data, it is very difficult to encourage the right biomedical research.

The conflict of stakeholder’s needs being met against that of patients’ needs, must stop. We have seen for decades the suffering which is been in plain sight and listed in this release. It has been in coroners’ reports, NICE and so many other places. Decades go by, without the conflict brought in by talking therapies and exercise being the only and preferred option for stakeholders. This approach needs to be held to account, and bad science needs to be taken down for safeguarding health of this community.

There needs to be clear acknowledgment of the harms as listed here, and the patient blame that has stopped the right approach to this community and the unspeakable behaviour towards them.

 

[Andy]

I worry about this. Are they thinking of separating ME from CFS?

I don't know what the govt plans but some people do interpret ME/CFS to mean "ME and CFS", without realising that this suggest that they are separate things.

To add to the potential confusion, the IOM also clearly says that "For the purposes of this report, the umbrella term “ME/CFS” is used to refer to both conditions [ME and CFS].", whereas ICC and CCC, in different ways, treat ME and CFS as the same thing.

 

[Robert 1973]

There has been an unwillingness to support those doctors that understand the need to test for OI, POTS Mast cell hEDS, EDS all of which are known to be involved with the decline of those with severe ME. Without this data, it is very difficult to encourage the right biomedical research.

I think you need to be cautious about referring to hEDS, POTS and MCAS in this context. There has been much discussion about these diagnoses on here. @Jonathan Edwards and others are better qualified than me to comment on the details.

 

[Tilly]

The problem is this a result of the consultation so they will just fall back to that. I think they are basically summarizing the themes that they had in responses. The problem as I see it is that they are not representing the numbers saying different things just the range of responses.

One thing to think about would be an FoI to get a more detailed analysis of the numbers for each of the statements included - I assume that they will have done this analysis so it will be available. Even an statement saying they don't have the data could be useful in arguing that they can't reason about responses when things are changed,

Another thing that could be asked is about the sign off process, Was this purely the DHSC Primary & Community Health Care Directorate compiling and signing off or did it do the rounds of the different government orgs and departments (say NHS England) and hence what edits were made by who.

Overall the issue as I see it is are they using this as a way to water down the delivery plan which is already weak in terms of concrete actions (although good on general promises).

FOI is a good idea just to kick them into action but like you say it is the outcome that is important.

What gives me hope and something to work on is the lived experience and how it is used, changing the narrative to meet an agenda is unacceptable but one we can show happens? This is heavy on information from NICE and we can show it is also taken from known documentaries. There has been none made on the experience of those who have gone through CBT and GET that is positive and they have listed Natalie Boulton dialog films so we have a lot to work with there?

 

[Tilly]

I think you need to be cautious about referring to hEDS, POTS and MCAS in this context. There has been much discussion about these diagnoses on here. @Jonathan Edwards and others are better qualified than me to comment on the details.

I understand but you must never dismiss the reality of most that live with the condition. Their truth is there it just needs to be seen. Family Courts are being tacked with this and along with Luke Clements, Fiona Gulen- Scott, Support not Separation and Parent Families Allies Network and others are that I am involved with say the same, that we must look and find the lived experience to enable understanding. We must start asking the right questions about data. If you don't look you don't find and then that leads to misinformation.

 

[Jonathan Edwards]

There has been an unwillingness to support those doctors that understand the need to test for OI, POTS Mast cell hEDS, EDS all of which are known to be involved with the decline of those with severe ME. Without this data, it is very difficult to encourage the right biomedical research.

The problem is, @Tilly, that there are no such data. I am not aware of any evidence for these conditions contributing to decline in ME/CFS. We need to remember that the doctors who talk about these categories have failed to solve the problem as much as anyone else. They have done no meaningful research. I see no reason to support this sort of speculation. And the more it is talked about the more that feeds the story of 'false illness beliefs'.

Nobody is denying the need to focus on the reality of patients' symptoms, but these speculated diseases are not those realities. They do not provide any 'truths' for us. Management based on these speculations may also cause harm.

 

[Adrian]

My first draft of the letter to all

Excuse the round robin approach but as you can appreciate time is short and my caring responsibilities increase at this time of year.

I have been an advocate for those with ME and PEM for the last 10 years. I was involved in the new NICE guidelines and the NHS development of the delivery plan. Sadly, those with severe ME and PEM lose their voice because they are unable to spend the energy needed to engage. They have; by and large been mistreated by those that should have understood and protected them, as you can read in the link below.

Yesterday I received this in an email regarding the NHS interim delivery plan on ME/cfs

https://www.gov.uk/government/consu...ll-reality-the-interim-delivery-plan-on-mecfs

I hope that SNEE, give the opportunity for those voices to be - not only heard but acted upon and it is up to us all to grab the courage needed to support those voices, uncomfortable truths need to be addressed.

I will be writing to individuals in the new year. This, however, will be an open letter so that the community can comment on it and take steps as they are able or ask me to take steps on their behalf.

The most important part is the sighted research and papers, explaining the horrors of this illness. Please take note that all services and the education of professionals need to understand this disease, should start from this baseline sighted papers then grow and be supported from those that have the lived experience. We need to build bridges and communication with reasonable adjustments to enable change.

Funding for ME has, as I understand it been there, but has been filtered away from meeting the need for tests and treatment for those with ME and PEM. An unwillingness to use the correct survey questions such as do you have OI, POTS, Mast Cell or have you been denied these tests and the use of the SNOMED codes. These questions need to be in the open so that the forward plan meets the physical and safeguarding needs of these patients.

There has been an unwillingness to support those doctors that understand the need to test for OI, POTS Mast cell hEDS, EDS all of which are known to be involved with the decline of those with severe ME. Without this data, it is very difficult to encourage the right biomedical research.

The conflict of stakeholder’s needs being met against that of patients’ needs, must stop. We have seen for decades the suffering which is been in plain sight and listed in this release. It has been in coroners’ reports, NICE and so many other places. Decades go by, without the conflict brought in by talking therapies and exercise being the only and preferred option for stakeholders. This approach needs to be held to account, and bad science needs to be taken down for safeguarding health of this community.

There needs to be clear acknowledgment of the harms as listed here, and the patient blame that has stopped the right approach to this community and the unspeakable behaviour towards them.

I'm not clear what you are actually asking for in terms of actions in your letter. Its good to make simple requests for actions that could be achievable

 

[Kitty]

we must look and find the lived experience to enable understanding

I agree, but it's exactly why self diagnoses like MCAS don't work. People need to give their own account of their symptoms and how they affect them, not present them in a box with a pre-printed label.

Doctor can only learn to understand and diagnose illness by listening to people's real, lived experience of it.

 

[Binkie4]

I agree, but it's exactly why self diagnoses like MCAS don't work. People need to give their own account of their symptoms and how they affect them, not present them in a box with a pre-printed label.

Doctor can only learn to understand and diagnose illness by listening to people's real, lived experience of it.

But that is how some of us got our diagnoses of these illnesses. We described our symptoms and lived experience to a specialist doctor and were diagnosed, usually after appropriate examinations and testing, with the appropriate condition. In some cases there were treatments. I have diagnoses of MCAS, OI and hEDS none of which I diagnosed myself. They were diagnosed by specialists in the condition.

 

[Binkie4]

I'm sorry if my last post was a bit abrupt.
It has been a tough couple of days for us all in the ME world so it's time to stop and try to rest.

 

[bicentennial]

Spoiler

I think the Delivery Plan excerpt above has earmarked that there is no strong evidence that anyone with ME / CFS will ever recover, and done this in with the Recommendations to make assisted dying available are required.

This aligns with the Inquest finding which approacxhed saying that Miss Boothby O'Neil had a terminal case of M.E/CFS

The medical profession has fought shy of clarifying anything. All associated allied orgs (statutory, commercial charitable, clinics, research units, rehab clinics and rehab research units, ethic commitees, their institutiuons, commissions an dfunding bodies, the trade journals includes cochrane), all failed to standardise anything or reach consensius but continue to churn out incoonsistent and clashing and ncomplete and innacutrate information

Guidance can be used to prohibit many things opnre or close many gates, elsebut not to mandate anything. The Long Covid groups are falling into the same vortex

The Delivery author does not jnderstand the matter being drafted. Does N.I.C.E provide a medical advisory service in such cases to interpret the Guideline eg on the question of prognosis for Delivery AND CONTINGENCY planning at individual,local, regional, national, pandemic aqnd other emergency levels

- there being I suppose no strong evidence that people do or don't recover, such that a clear bias is shown by not saying so.

Can N.I.C.E clarify that as far as is known M.E is not a terminal conditon in itselfef, though some people may have problems with some vital organs which can be treated but wth accomodations for the primary illness and disability, and on a case by case basis it may be agreed if someone ois nearing death, there may be dnr in situ, but it cannot be written into the generic ME ?CFS literture a= so sloppily as if it can apply inm any ora ll cases

there is no road being mapped for peopl who do not recover. its plainlt not economical

the gp college has produced a leaflet with nothing in it about community care or wheelchaors etcit purporst toput al lc cases

I can see the creep has started in this excerpt. I do not want to be in a flaring resource-strapped pandemic as has been predicted and find myself written off as if M.E can be termimnal and therre is not striomg evidence thsatincan recover. I can make partial recovery.

It is not sufficient to have such a crude u= medical inderstanding draftoing a delivery plan

The only provision i see being budgeted for for long term conditions is talking therapy to reduce the waiting lists by discharging outpatients sooner

Evidently a very large cohort of M.E / CFS / LC are still being excluded from the rehab clinic network that controls the M.E / CFS / LC budget and those included have indeterminate diagnoses but after short term rehab apoparently tmost of the LC cases will have recovered


the Mea and since becoming frail himself, Dr shepherd alsohave agreed tht mostpeoplewith me /cfs can mobiliseif they want to to some indeterminate extent oif not exaggeratig the symptoms that kept them tool long abed

There is no provision being planned for the severley ill. There is no HS budget and planm for it. Its all gone to rehab.

The Royal College of GPss appears to appears to have runoured through their subcontracto Long Covid SOS that the severe and/or longer term LC patients will may be reclassified as M.E

Any questions to be answered by a team of SOS leaflet colunteers in collaboration with the clinical post covid society

THis makes no sense. Where are the contractedfunded profesisonals engaging with the wider community oin the draftint of the severe LC = ME/ CFS = PEM gp leaflet and where are the secoinbdary level consultants N.I.C.E reuqired to advise promary care on NG 206

none of this is acceptable.There has to be a universal language thats inclusive and can be agreed upon and standardised

There must be a didtinct segregation and naming of differentiated cohorts.

on the whole there is nothing terminal about the illness as far as is known

i want this spelt by the Cabinet and prime Minister to the authors of the Planin default of the health sutorities spoosed to be advising. What a croc

please please please correct me where andif i am wrong

 

[bicentennial]

i want to see a description of the symptomatic impairments suffered with some typical individual variations that fall within each of the labels cited and provided by Tilly eg pots, mast, edr. There are separate specialists who treat these conditions. some within the NHS but there is no national consensus so i want the description to be used wthout the label and without attributing symptoms to systems and organs

thats the only way ot can be discussed with a broad audience

I want to see this because these problems are associated with hard to manage cases, my extra problems are different, its become supremely important to the bereaved and the survivors to have some recognition and accomodation and response to such extra problems. Many people with m.e without these particular problems have no medical care at at all. Some people do or don't have the care to go with the extra problems. It can''t just become a tabu subject

its become mutually obstructive. this results in one each cohort feeling undermined if included with the other. Can we use thoroughly considered language to find a way through this

I think its not now possible to include all of the extra problems in the basic descrptions of m.e except as a passing reference if we can find a common language

Tilly is very busy, could others who are managing such conditions get working on the descriptions that can bring them to life witout getting technical

For technical descriptions you'd need to go to the doctors that diagnose and treat these problems

We also need an outline of what people with these extra problems need of the m.e community consensus we need to forge to obtain autonomy in the procedures surrounding us

is it clear which is the primary diagnosis in these cases. there is a large cohort thst refuses to have these problems labelled as apart of m.e becaue not everyone has them and because there is no national consensus so its not going to be widely agreed to put m.e and pots into a leaflet

I don't even have a name for my extra problem, it can be devastating and could be lethal and i run out of road if it gets out of hand while the nhs refuse to indulge my delusions

this is the common predicament. maybe there is a private part of the forum not acxcessible to all memebers that can be opened for a working group to work on a common language for exotic extra problems like mine - i am sorry but we may need to find a way to avoid using the labels accustomed at the public interface where it is ME / CFS Delivery plan on the agenda tho i would rather prioritise my toxic crippling diarrhoea and malnuty, tissue starvation and malnutrition, that can follow, and will be on thre list wecan draewup, we just can't structure nhs healthcare for any of it due to the siege blockade ongoing

 

[bicentennial]

I think the Delivery Plan excerpt above has earmarked that there is no strong evidence that anyone with ME / CFS will ever recover, and done this in with the Recommendations to make assisted dying available are required.

This aligns with the Inquest finding which approached saying that Miss Boothby O'Neil had a terminal case of M.E/CFS

The medical profession has fought shy of clarifying anything.

:

Spoiler: Think ... thunk: assisted dying is:

Think...thunk: assisted dying is what was already happening for everyone who died in a care home, nursing home, hospital, sheltered housing, hospice or anywhere else with more or less decent people around, because people were assisted upon their deathbed. That is the true meaning of assisted dying. Someone helps to keep yuu alive and as comfy, clean, fed and watered as is possible. That is the assistance that attends an attended dying.

The new law is a euthanasia law it is not an assisted dying law, but we have had doubslespeak at least since Mr. George Orwell made his own contemproary obseration

It is derived from the medical definition(s) of euthanasia (except the versions where its to end suffering).

It is "strictly" limited to end-of-life eligibility

Spoiler

EXCEPT the crackpots (hidden in the Govt & Oppositions & Civil Service cohorts) leaked the creep into our Delivery Plan, attributing this creep to us, so we can foresee the intention before it emerges elsewhere, to include cases of "no recovery" for which they will have to add an "if suffering " eligibility

In fact there may be some creeper(s) amongst us who put it into their own consultation reply requiring euthanasia options for all people with M.E so as to sneak it in for themsleves as if popular. Or else its just a Government proposal

The UK is patient and has not passed the euthanasia law - it is still drafting it with patient participation at the euthanasia plan portal which was intentionally expanded to now include the M.E Delivery Plan Portal (Plan Portal as as there is no delivery to speak of yet so there is no Delivery Portal).

S

Spoiler: So our mouthpiece

So our mouthpiece the MEA Trustees will be quoted at both portals as speaking for all of us. On how us animals must move or else and anyone who disagrees is a keyoard warrior with satanic influence to be exorcised out the window and excommunicated

. And here we are at the very portal

all the evidence of any quality shows that S4ME IS IS IS our only portal for inclusive equable diverse opportune participation in the experimental research being conducted by the UK into several overlapping deliveries)

And we know this because we have no other portal in the UK. It is a diagnosed portal diagnosed by exclusion.

so at this portal it behoves us to categorically define and list our own sub-cohorts, and as a courtesy start with our Government's only current priority in practice (also because we do need to keep up with current practice):

1: ready or not ready to return to
- health and work
- health and work with adjustments because health is still dicky
- health exempt from work
- some increased activity
- none of the above and not ready for anything either

2. Suspected or diagnoised (crucial phrase filched from NG206)
- ME / CFS with no LC symptoms starting since Covid (do not include intermittent relief)
- ME / CFS with LC symptoms starting since Covid (include if intermittent)
- ME / CFS with no LC symptoms ever (that were not already ME / CFS symptoms)
- LC with ME / CFS symptoms starting since or with LC
- LC with no ME / CFS symptoms
..........that are not already listed in LC diagnosis criteria as overlapped

1a and 2a sub-sub cohorts of no known abode or listed on other diagnostic criteria
- diarrhea with or without systemic impacts
- swallowing
- malnutriton
- urinary
- balance and vestibular leaning forward etc
- bendy joints
- reactions to triggers
- breathing oddities
- heart oddities
- blue or purple legs
- frailyty of old age
- gravitational intolerances

- PEM or similar, and severe LC likewise being the special case to be clarified if still in the ruptured, sorry rumoured and excluded bracket the Royal College of GPs plan to transfer to the ME / CFS coding, as excluded from the Return to Healh and Work Budget SOS / CPCS version (Delivery Plan UK) see @yann04 and @Dx Revision Watch, maybe

edit to add links to see @Yann04 and @Dx Revision Watch maybe

Also we speak for all other cohorts said to have no chance of recovery (Return to Health and Work) and - in that sense only - a lifelong illness is terminal and can be terminated, with compunction of curse, sorry of course, in due course

Once it is agreed that i can partially recover and still retain all exemptions, then i can be pput back in the delivery plan and so provided for, on paper, again

That said for starters.

 

[Dolphin]

ME Research UK:

The October 2023 public consultation results on the interim Delivery Plan for ME/CFS have been released. What were the thoughts on research? See how your voice shaped the conversation: https://tinyurl.com/2b42ux6w

https://twitter.com/user/status/1871598513303285918

 

[Maat]

Section 5.10 Agreed Actions of the Interim Delivery Plan under sub-heading attitudes and education stated this:

On education about ME/CFS, DHSC will:

• request that the Medical Schools Council encourage shared learning and the NHS England e-learning package on MECFS to all UK medical schools and encourage medical schools to provide undergraduates with direct patient experience of ME/CFS, to raise awareness among medical students, by the end of March 2024

From the results of the consultation on Attitudes and Education section, sub-heading Education and training:

People with ME/CFS and patient groups should be involved in the training process by helping to devise training materials, and providing patient stories and face-to-face contact with healthcare professionals during training.

This is an example which was posted on another thread which is/has already happened:

https://measussex.org.uk/medical-training/

MEDICAL TRAINING
By SMEAdmin On 16th December 2024

| No Comments


We have recently been working with a Doctor at Brighton and Sussex Medical School who has been doing some training on ME/CFS that two of our members have taken part in. There will be an update on this in the next Sussex & Kent ME/CFS newsletter.

—-
Colin Barton on MEA Facebook page:
The Sussex & Kent ME/CFS Society recently collaborated with the Brighton and Sussex Medical School in a medical students training session about people affected by 'invisible' illnesses: www.measussex.org.uk

In the response from the Medical Schools Council dated 26 November 2024 to the Coroner area of the County of Devon, Plymouth and Torbay the Director in connection with the Regulation 28 PFD report - Maeve Boothby O'Neill, they stated:

I also asked medical schools to send me some examples of how they teach this important area, and I would like to share with you some of the responses;

We have a learning event in Year 1, in which students will learn about the clinical features, proposed pathophysiological mechanisms and biopsychosocial interventions for management for chronic fatigue syndrome/ME, fibromyalgia and post-covid syndrome. The students will build on this session in subsequent years. We think it is important to highlight the burden association with these diseases and sequalae that can occur.

In our curriculum we do cover CFS and chronic widespread pain. We have teaching materials on it in the Y4 Musculoskeletal and in the GP block and we cover the important area of differential diagnosis for fatigue​

Edited to tidy up typos and to point out that the illness being discussed is ME/CFS.

 

[Nightsong]

Copied post
Two articles in the Times:

"Plan to help ME sufferers has been delayed for too long" (written by Helen Morgan, Lib Dem MP for North Shropshire):

Link | Archive link

and "Plan to help ME sufferers will not include extra funding":

Link | Archive link

 

[MrMagoo]

Moved post
I’ve seen a quote from Sonya Choudhry on socials saying we need funding alongside the plan.

 

[MrMagoo]

No money with new ME Delivery Plan
https://archive.ph/a3iYo

 

[Nightsong]

I’ve seen a quote from Sonya Choudhry on socials saying we need funding alongside the plan.

Sonya Choudhury is quoted in a recent Bluesky post as saying that "We were disappointed to hear that the Department for Health and Social Care has ruled out allocating any funding alongside the final delivery plan. The delivery plan is an important step forwards for the ME community but without additional funding for much-needed and overdue research, its impact will be limited."

Both articles also made it into the print edition of the Times:



Also, underneath the Times article by Eleanor Hayward there is a form where they are asking for people to share their experiences of ME. I don't know anything about this but here is a share link to the article:

https://www.thetimes.com/article/06...b?shareToken=3312ee0d3ebd98a73bff9a1a6dce085f

 

[Tilly]

I think you need to be cautious about referring to hEDS, POTS and MCAS in this context. There has been much discussion about these diagnoses on here. @Jonathan Edwards and others are better qualified than me to comment on the details.

I have always disagreed with this approach because of what I have witnessed and what I have lived through. We should have been looking for the main patterns before research, not the other way around. I have written about these connections to family Courts, protecting innocent mothers and their children. Collagen damage, POTS and Mast Cell is a huge problem and needs to be seen! Due to the recent research, explained in this yourtube video The Power Crisis Behind Long Covid & ME/CFS | Latest Mitochondrial Research Explained (there maybe a link on here but is relevant here) I hope we start to really listen to young people and their parents the lived experence should always be understood and not dismissed.