V.R.T.
Senior Member (Voting Rights)
Agreed and this is why appeasement of BACME types will never work.
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UK House of Lords/ House of Commons - relevant people and questions
- Thread starter Sly Saint
- Start date
JellyBabyKid
Senior Member (Voting Rights)
Yes. I cannot understand how MEA got here.
I find it terrifying that they are taking us in exactly the wrong direction and at great speed.
Peter T
Senior Member (Voting Rights)
For several decades, there has been a reasonable possibility that withdrawing the specialist services here in the UK would see improvement in long term outcomes. For the existing services to provide more of the same for those with severe or very severe ME/CFS would be horrific. It is so hard to understand how the charities, especially the MEA, are not screaming this from tge roof tops.
BrightCandle
Senior Member (Voting Rights)
Many of the charities backed PACE and its outcomes. I am not all that surprised to find them backing the latest exercise rehab schemes.
Not long ago the MEA was led by a person who wrote articles twice that told patients to exert more and the entire board stayed quiet and didn't even fire him for 6 months waiting to see just how much damage the backlash would do before deciding keeping him was actually a liability. Clearly those that run the MEA agree with patients exerting more to improve, they just don't want to say it because it will harm subscription income. There was no outrage from them on his article and nothing since to suggest they are against the rehab model at all.
Are patient 'representatives' going to end up being our worst enemy?
How does every hard-earned step forward end up being so easily hijacked by the psychosomatic-rehab cult and perverted back to their benefit and make us worse off?
What the hell is going on? Is governance really that broken? Are we really such contemptible pieces of disgusting peasant scum to them?
Why do they even bother going through the act of pretending to care? How much more brazen can this cruelty get?
Can somebody please explain what we have done to deserve this endless ruthless assault from all sides?
How does every hard-earned step forward end up being so easily hijacked by the psychosomatic-rehab cult and perverted back to their benefit and make us worse off?
What the hell is going on? Is governance really that broken? Are we really such contemptible pieces of disgusting peasant scum to them?
Why do they even bother going through the act of pretending to care? How much more brazen can this cruelty get?
Can somebody please explain what we have done to deserve this endless ruthless assault from all sides?
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JellyBabyKid
Senior Member (Voting Rights)
Which I, clearly naively, thought they had learned from, and yet, here we are again.
This makes me incandescent with rage and feel completely powerless that we will ever make progress. I am beyond frustrated, and actually quite scared as to where this is going.
Good people are using all their energy, and doing everything possible, to move us forward and then our own charity undermines and undoes that in a few actions - and using money raised by pwME.
There are no words sometimes.
JellyBabyKid
Senior Member (Voting Rights)
Exactly, instead they seem to have forged a partnership for more of the same, but worse, faster. And only ask people for their opinion where they are new to the illness so don't understand the history, and/or think that something is better than nothing and are grateful for anything, without realising that the something being pushed is not benign and a filling a gap, but actively damaging and erasing of the illness itself and is doing the DWP and government's job for them; minimise reality, push people into work and to hell with the cost to patients, all while claiming to have helped, while doing the exact opposite.
MeSci
Senior Member (Voting Rights)
I really don't know, but AfME were terrible before Sonia Chowdury became prominent, as illustrated here: https://www.s4me.info/threads/rethi...al-of-graded-exercise-and-cbt.2282/post-41444
Does anyone have a link to an official notice of this?
Nightsong
Senior Member (Voting Rights)
Sly Saint
Senior Member (Voting Rights)
The turn around has actually been very slow and taken a lot of lobbying.
@Trish has done more than her fair share
eg
Sonia has been CEO since 2012. AfME worked very closely with Crawley and Hazel O'Dowd for several years under her leadership. There has only really been an improvement since the new guidelines debacle, all the more noticeable because of the MEAs apparent change of stance.
Tao Fogger
Senior Member (Voting Rights)
Jessica Brown-Fuller Liberal Democrat Spokesperson (Justice)
To ask the Secretary of State for Health and Social Care, what assessment her Department has made of the adequacy of NHS pathways for patients with Long Covid, in particular the extent to which current service structures allow for an overall or holistic clinical view of the condition.- Tweet Share
- Hansard source(Citation: HC Deb, 26 May 2026, cW)
Sharon Hodgson The Parliamentary Under-Secretary for Health and Social Care
The commissioning of services for Long Covid is the responsibility of integrated care boards, which should be in line with NHS England’s commissioning guidance for post-COVID services, which sets out a blueprint for best practice in supporting people with Long Covid, and is designed to be adapted to local needs. The commissioning guidance is available at the following link:https://www.england.nhs.uk/publication/national-commissioning-guidance-for-post-covid-services/
As of 1 April 2024, there were over 90 adult post-COVID services across England, along with an additional 10 children and young people’s hubs. In addition to the support provided in primary care, published data from April 2024 shows over 100,000 people have been seen by a specialist post-COVID service, with a further 350,000 follow up appointments taking place.
Additionally, the template service specification for mild and moderate myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), which is currently being developed in conjunction with NHS England, is set to include Long COVID. The template aims to improve pathways through care for patients with Long COVID, ME/CFS, and other related conditions.
NelliePledge
Senior Member (Voting Rights)
Wishy washy I hope in reality Sharon Hodgson is putting pressure on the DHSC and NHS to get their act together and isn’t allowing them to continue stonewalling for the status quo, or rebranded status quo without serious challenge
Nightsong
Senior Member (Voting Rights)
What related conditions?
If the service specifications for ME/CFS and LC are going to be merged we can be sure that it will be entirely framed around rehabilitation and other such completely unwanted & unneeded approaches.
Is anyone actually doing anything about this, or are the charities just bovinely nodding their heads as usual?
I really think this process needs to be derailed before it causes any more harm than we're already subjected to.
This is peak consultantspeech. There is no degree of consultantspeech that manages to mean less than this. It says absolutely nothing, a string of words perfected for their meaninglessness.
Wow. They were seen. Well, damn, who needs to do more, then? If you completely overlook how widely those services are condemned for being useless, well it still looks really bad because wow is that a total waste of resources compared to what's possible to achieve and how that number is a small fraction of the whole anyway.
There is corporate greenwashing out there that easily manages to feel less like it was thrown together by an amoral algorithm devoid of any connection to reality. In fact most of it easily achieves that. It's common for people to frame being dismissed as "mere statistics", but it doesn't even come close to rise up to that here. Most of is uncounted, not properly recorded, or recorded wrong intentionally.
BrightCandle
Senior Member (Voting Rights)
IIRC the UK GP records show they only managed to diagnose 35,000 patients and most of that was done in 2021 and 2022. They are literally seeing them and not even diagnosing them, its a clear example of managing patients out of the healthcare system and refusing to even consider treating their symptoms. The system is doing what was intended, denying healthcare, suppressing the stats and appearing to the average person to have done something. Its reassurance for the masses that getting Covid wont be so bad we have all these clinics, never mind how utterly useless it all is.
Tao Fogger
Senior Member (Voting Rights)
Liz Jarvis Liberal Democrat, Eastleigh
To ask the Secretary of State for Health and Social Care, what timetable his Department has set for implementing the commitments relating to research, attitudes and education, and support for people living with ME/CFS contained within the Government’s policy paper entitled 'ME/CFS: the final delivery plan'; whether his Department plans to publish regular progress reports or annual reviews on implementation; what assessment he has made of whether NHS bodies have sufficient workforce capacity and resources to deliver the commitments contained within the plan; and whether any delivery timelines or implementation milestones have been revised since the plan’s publication.- Tweet Share
- Hansard source(Citation: HC Deb, 27 May 2026, cW)
Sharon Hodgson The Parliamentary Under-Secretary for Health and Social Care
The final delivery plan on myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), published in July 2025, contains 44 actions for the Department of Health and Social Care, NHS England, other Government departments, and other organisations to implement. Of these commitments, over half have been delivered already, with many more actions progressing well.Progress on research-related actions will be reported on annually, to the ME/CFS Post-Implementation Stakeholder Engagement Group and officials intend to provide the first of those annual updates on progress against all the actions included in the final delivery plan to stakeholders in the coming months.
To help support healthcare professionals in the diagnosis and management of ME/CFS, the Department has worked with NHS England to develop an e-learning programme for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. All sessions of the e-learning programme are now available at the following link, with sessions one, two, and three having universal access, whilst the final session on managing severe ME/CFS is only available to healthcare professionals:
https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288
The Medical Schools Council will promote the e-learning programme to all United Kingdom medical schools and will encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS. Additionally, the Department has taken steps towards developing the awareness campaign that was committed to in the plan.
NHS England, with support from the Department, is developing a template service specification for mild and moderate ME/CFS, which will aim to support the commissioning, provision and evaluation of services for patients. Following stakeholder feedback, this template now includes reference severe ME/CFS. This template is intended to be published alongside a Language Matters Guide. The impact on National Health Service bodies, outside of NHS England, is expected to be minimal. The decision has been made to delay the action to consider whether a specialised service should be commissioned for very severe ME/CFS until April 2027. Currently, this is the only action that has been delayed.
INdeed - the underlying conditions issue needs to be underlined and interrogated not just let pass.
I'm hearing that the things that are for 'anything but me/cfs' will be allowed to be the main thrust of the services and as usual funding for me/cfs people goes to something that harms them in the name of it's ok because we have some 'fatigue people' who gave us some ok responses on subjective measures.
And having watched all of the debates around 2018 etc and with word Hodgson was part of these then she knows this differentiation too. You don't just forget and unlearn that.
have ministers and the DHSC not caught the penny-drop that the old services and old staff and old profiters from those have been supply-led with something that was never 'for' me/cfs and seem to be being allowed to develop measures (and therefore services) that avoid the norms of any true medical care for any medical condition.
is there a question that could be asked that is along the lines of what safety and progression/prognosis and mortality etc measures are used for x, y, z medical conditions as examples of what biomedical would do and be assessed by and then ask why what is deemed OK for me/cfs is closer to what - physio-after-an-op proms outcomes or mental health 'managing' type stuff that doesn't even attempt to ameliorate what people are suffering just if their behaviour has changed.
I don't think the word 'holistic' being used in a question indicates a sign of someone who has mastered the intricate problems of switch-and-bait 'offering something' and crud being hidden under the term 'multidisciplinary' in a question - but then I realise that we never know where questions originated and MPs represented constituencies etc.
Because I think we do absolutely seem to have still the makings of an old and outdated rehab mindset that doesn't even rehab anyone even if it had 'treated' first still being the basis of almost every service - and noone is admitting the emperors new clothes of it all.
Which makes it a service funded for the benefit of a bunch of old (and some lining up to get on the gravy train) staff that gets talked about, nothing to do with either an illness or the 'patients', certainly not ones with ME/CFS
A bit of accidental honesty there.