UK House of Lords/ House of Commons - relevant people and questions

consultant clinical psychologists, assistant psychologists, specialist occupational therapists, and rehabilitation staff
Click to expand...
Another psychobehavioural clinic, then. Precisely what we do not want and do not need.
At a national level, the ME/CFS Final Delivery Plan, which the Department published in July, includes an action for the Department and NHS England to explore whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe ME/CFS. Officials from the Department have commenced discussions with NHS England on how best to take forward this action.
Click to expand...
To the pwME who are in favour of this plan, I would ask: who would run such a clinic? Is there a suitable candidate ready, waiting and willing? Does the NHS have a good track record when it comes to providing clinics for, and services to, pwME? Why would they set up a new clinic that was at odds with most of the existing provision? Who do they turn to when it comes to issues involving ME/CFS?

If this is attempted at the moment it will be a disaster. They will turn to BACME; they will turn to NICPM, they will turn to the existing psychobehavioural clinics. Pretty much everyone with "professional" experience of specific involvement with ME/CFS in the NHS is involved with those clinics and has fixed ideological beliefs about what ME/CFS is and isn't. They are the problem.

If this continues, we're going to end up with a BACME stalwart - or, worse, some Maudsley liaison psychiatrist or behaviouralist - running a clinic whose staff publish a constant stream of gibberish in the Journal of Psychosomatic Research, with all the authority that comes from being the national specialist referral centre. As I understand it Norwegian patients are trying to get their "National Competence Centre" - that they themselves campaigned for - shut down. The same thing will happen here, but it will be incredibly difficult to get rid of once up and running.

No such attempt should be made until radical changes are made to NHS policy & existing service provision for ME/CFS.
 
I don't think you can put the NHS in charge of solving this problem, I don't think it has the sort of culture that can solve this problem without resorting to harm, they believe it too deeply they will twist any guidelines into the same thing until there is a proper approved treatment, and even after. Until our politicians truly accept that and aim to solve it I don't think we will see anything but the lastest rename of exercise and CBT clinics
 
Last edited:
Tao Fogger said:
There has been no specific comparative review on the level of funding for research into ME/CFS compared to other illnesses. The Department invests over £1.6 billion each year on research through the NIHR, including on ME/CFS. Research funding is available, and applications are subject to peer review and judged in open competition, with awards made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.
Click to expand...

Should the next step be, since it is not already being done, to ask for a comparative review of the level of funding for research into ME/CFS compared to other illnesses?

Tessa Munt made some good points with comparisons of how funding is spent in her Westminster Hall speech. 60p per person with ME per year for the last 12 years. No money allocated with the Delivery Plan which is being rolled out by multiple speakers to demonstrate commitment to ME. It is a mockery. Do we think the Under Secretary who rolled out above answer actually knows anything about ME and its funding?
 
Sean said:
The ME/CFS service team consists of a wide range of skilled staff, including consultant clinical psychologists, assistant psychologists, specialist occupational therapists, and rehabilitation staff.
Click to expand...
I feel sure that there was a wave of grim laughter as people with ME/CFS all around the world read or heard that line. Certainly I laughed.

A wide range of skilled staff, with two of the four examples given being 'consultant clinical psychologists' and 'assistant psychologists'? I felt like suggesting that they could have included 'student psychologists doing summer work experience placements' to make the range even wider.
 

Photo of Baroness Scott of Needham MarketBaroness Scott of Needham Market Deputy Chairman of Committees, Deputy Speaker (Lords), Chair, Home-based Working Committee, Chair, Home-based Working Committee​

To ask His Majesty's Government what assessment they have made of the adequacy of NHS care for patients in England with severe and very severe myalgic encephalomyelitis; and what steps they are taking to improve it.

Photo of Baroness Scott of Needham MarketBaroness Scott of Needham Market Deputy Chairman of Committees, Deputy Speaker (Lords), Chair, Home-based Working Committee, Chair, Home-based Working Committee​

To ask His Majesty's Government what steps they are taking to ensure that hospital and community services effectively prevent and manage malnutrition among people with severe and very severe myalgic encephalomyelitis in England.

Photo of Baroness MerronBaroness Merron The Parliamentary Under-Secretary for Health and Social Care​

We published the final delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), on 22 July, which focuses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.

The commissioning of ME/CFS services is the responsibility of local integrated care boards based on the needs of their local population. The ME/CFS Final Delivery Plan includes an action for the Department and NHS England to explore whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe ME/CFS. Officials from the Department have commenced discussions with NHS England on how best to take forward this action.

To support healthcare professionals in the diagnosis and management of conditions like ME/CFS, the National Institute for Health and Care Excellence (NICE) published guidance for ME/CFS in October 2021, a copy of which is attached.

It recommends that people with ME/CFS should be referred for a dietetic assessment by a dietitian with a special interest in ME/CFS if they are losing weight and at risk of malnutrition. The guidance also states that clinicians should recognise that symptoms of severe and very severe ME/CFS may mean that people are unable to eat and digest food easily and may need support with hydration and nutrition, and that the support provided could include oral nutrition and enteral feeding.

NICE guidelines are evidence-based, informed by clinical expertise, and represent best practice. Although NICE guidelines are not mandatory, healthcare professionals are expected to take them fully into account.

NICE ME/CFS guidance (pdf, 536.2KB)
 
Binkie4 said:
Should the next step be, since it is not already being done, to ask for a comparative review of the level of funding for research into ME/CFS compared to other illnesses?
Click to expand...
The more salient point is that ME/CFS cannot compete fairly with other diseases because almost no other diseases are actively hated and discriminated against as not existing, thus requiring special status to lift it out of the sinkhole it was put into intentionally.

This argument is so fake and dishonest. The system is rigged against us, telling us that the system is willing to help us, which it isn't, is a total bunch of BS.
 
UK gov said:
NICE guidelines are evidence-based, informed by clinical expertise, and represent best practice. Although NICE guidelines are not mandatory, healthcare professionals are expected to take them fully into account.
Click to expand...
Saying this while obviously being aware that the institutions of UK medicine have explicitly rejected and refused to accept the ME/CFS guidelines is just layers and layers of dishonesty. They can't not know this, it's not credible, it was even publicized FFS.
 
Binkie4 said:
Should the next step be, since it is not already being done, to ask for a comparative review of the level of funding for research into ME/CFS compared to other illnesses?

Tessa Munt made some good points with comparisons of how funding is spent in her Westminster Hall speech. 60p per person with ME per year for the last 12 years. No money allocated with the Delivery Plan which is being rolled out by multiple speakers to demonstrate commitment to ME. It is a mockery. Do we think the Under Secretary who rolled out above answer actually knows anything about ME and its funding?
Click to expand...
Yes. But...
Sonya Chowdhury Action for ME as part of the CMRC was asked to do a comparison review back in 2016. It made no difference, MRC response was to say they would take another look at their highlight notice. It was presented on for ten minutes at the CMRC conference of 2016 on YouTube , questions and further debate were refused & then the MRC gave an hour lecture on improving the quality of applications, saying we had to increase the volume of quality applications ourselves - the community, despite stigma, absence of medical education, decades of misleading narratives- before criticising the MRC. The video is on YouTube.

The blame is not clear to outsider patients because it's all behind the scenes - the MEA spend time saying they've been very critical of the lack of government funding but have never campaigned for it and then they say things like the 'powers that be" aren't intetested in doing much for this illness and also say the MRC & NIHR don't think they need to do anything extra for m.e.. when literally every on else outside of the scientific elite think there's massive neglect & they should. Ultimately, it's the government who allocate money, as they did dementia back in 2014 & 23 but I think that they are being influenced by anti -action, in my view discriminatory attitude of the MRC & other scientific advisers, as well as being Very happy to not spend money if they can get away with it, which in this field where literally no one cares less, they think they can.
 
Cinders66 said:
Yes. But...
Sonya Chowdhury Action for ME as part of the CMRC was asked to do a comparison review back in 2016. It made no difference, MRC response was to say they would take another look at their highlight notice. It was presented on for ten minutes at the CMRC conference of 2016 on YouTube , questions and further debate were refused & then the MRC gave an hour lecture on improving the quality of applications, saying we had to increase the volume of quality applications ourselves - the community, despite stigma, absence of medical education, decades of misleading narratives- before criticising the MRC. The video is on YouTube.

The blame is not clear to outsider patients because it's all behind the scenes - the MEA spend time saying they've been very critical of the lack of government funding but have never campaigned for it and then they say things like the 'powers that be" aren't intetested in doing much for this illness and also say the MRC & NIHR don't think they need to do anything extra for m.e.. when literally every on else outside of the scientific elite think there's massive neglect & they should. Ultimately, it's the government who allocate money, as they did dementia back in 2014 & 23 but I think that they are being influenced by anti -action, in my view discriminatory attitude of the MRC & other scientific advisers, as well as being Very happy to not spend money if they can get away with it, which in this field where literally no one cares less, they think they can.
Click to expand...
Yes. I take your point that this has been ignored and misrepresented for years and it has been argued that quality applications are not coming forward which is why so little is approved for ME. Of course there never will be applications if young scientists are being advised not to go into ME research ( from memory Chris Ponting referred to this) because they won't be able to get grant funding.

I believe ( I have to have some hope) that times are changing and that there is more interest in ME and post infectious illnesses following covid. I think the recent Westminster Hall debate was very different from the 2018 one where my then MP Ed Davey talked about scientists disagreeing with a reference to the Pace trial. That was then: We have moved on in content and tone of the debate. The new guidelines are out. Maeve Boothby O'Neill's inquest gained a lot of positive attention plus the formation of new groups following covid like ' There for ME'. I don't know how the #Justice for ME campaign is coming on but fingers crossed. Tessa Munt promised to hold feet to the fire.

I think there will be a tough fight with the government however. A huge problem is that there is no money, no money at all. From memory the ICBs are supposed to be getting involved ( this needs checking but am currently ill with a severe mast cell flare so no capacity) but hasn't their budget and their staffing been halved? They won't be involved in research funding but services will be affected except that we don't have any.

Following the recent MRC/ NIHR conference on showcasing post infectious illnesses, we wrote to the MRC re recording of the day. We received a reply saying that while there is no recording of the meeting, they hoped to produce a written overview of the meeting which they would share. To our question about research, the response was that they
are keen to keep working with the patient and research community to spotlight the opportunities for biomedical research in this space.
Click to expand...
Click to expand...
I hope we as a community, can keep their attention focussed on our illness and the desperate need for biomedical research.

I've got lost on what is happening to funding for " Sequence ME". Does it have any funding? It's really hard to keep up with all that is happening while having ME and other conditions, and growing much older. I cannot advocate as much as I used to. I need to withdraw for the next few hours to try and get on top of these symptoms.
 
Cinders66 said:
Yes. But...
Sonya Chowdhury Action for ME as part of the CMRC was asked to do a comparison review back in 2016. It made no difference, MRC response was to say they would take another look at their highlight notice. It was presented on for ten minutes at the CMRC conference of 2016 on YouTube , questions and further debate were refused & then the MRC gave an hour lecture on improving the quality of applications, saying we had to increase the volume of quality applications ourselves - the community, despite stigma, absence of medical education, decades of misleading narratives- before criticising the MRC. The video is on YouTube.

The blame is not clear to outsider patients because it's all behind the scenes - the MEA spend time saying they've been very critical of the lack of government funding but have never campaigned for it and then they say things like the 'powers that be" aren't intetested in doing much for this illness and also say the MRC & NIHR don't think they need to do anything extra for m.e.. when literally every on else outside of the scientific elite think there's massive neglect & they should. Ultimately, it's the government who allocate money, as they did dementia back in 2014 & 23 but I think that they are being influenced by anti -action, in my view discriminatory attitude of the MRC & other scientific advisers, as well as being Very happy to not spend money if they can get away with it, which in this field where literally no one cares less, they think they can.
Click to expand...
This was targeted at the MRC though. I do think worthwhile for government to be shown comparison figures, but I can’t believe such discussions didn’t happen at the round table around research ie I think they know .
 

Photo of Rosena Allin-KhanRosena Allin-Khan Labour, Tooting​

To ask the Secretary of State for Health and Social Care, what steps he is taking to support people with myalgic encephalomyelitis in South West London.

Photo of Rosena Allin-KhanRosena Allin-Khan Labour, Tooting​

To ask the Secretary of State for Health and Social Care, if he will make an assessment of the adequacy of myalgic encephalomyelitis treatment in South West London.

Photo of Ashley DaltonAshley Dalton The Parliamentary Under-Secretary for Health and Social Care​

We published the myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), final delivery plan on 22 July 2025. The plan focusses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease, including those in South West London.

The ME/CFS final delivery plan includes an action for the Department and NHS England to explore whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for people with very severe ME/CFS across England. Officials from the Department have commenced discussions with NHS England on how best to take forward this action.

NHS England has also started its work on co-designing resources for systems to improve services for mild and moderate ME/CFS, including for patients in South West London. It will meet a group of key stakeholders to progress this in the coming weeks.

To support healthcare professionals in the diagnosis and management of ME/CFS, as set out in the final delivery plan, the Department has worked with NHS England to develop an e-learning programme on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. All three sessions of the e-learning programme, with sessions one and two having universal access, whilst the third session is only available to healthcare professionals, are now available at the following link:

https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288
 
,
Binkie4 said:
Following the recent MRC/ NIHR conference on showcasing post infectious illnesses, we wrote to the MRC re recording of the day. We received a reply saying that while there is no recording of the meeting, they hoped to produce a written overview of the meeting which they would share. To our question about research, the response was that they
.
Click to expand...
"are keen to keep working with the patient and research community to spotlight the opportunities for biomedical research in this space."
Click to expand...

This is woefully inadequate.
MRC have been making these noises along with tiny gestures for decades. They're not working with us or researchers (except Professor Chris Ponting), they're over riding us, ignoring our pleas, refusing most research proposals, doing nothing in response to priority consultations and deprioritising m.e. "Spotlighting opportunities" is no different to the highlight notice and CMRC conference that resulted in a £0.5m / year research average past decade for a condition devasting young people. It’s literally the least they can do for an illness that, in some people, is causing living death states.

It wouldn't be so bad if m.e genuinely was a chronic fatigue, where people had to give up sport & change job, reduce hours as the worst that could happen; No scientist or politician with a bedbound child would have acceptance of the level of progress that is asked of us. I think we need to turn m.e from statistics to a strong narrative the outside world can be moved by and hope action springs eg David Cameron and Tory friends sprung into action about prostrate screening when they could relate. As in America, I think our hope for an upgrade in response has to come from politicians and we have plenty now, just not the ones in gvt.
 
You must log in or register to reply here.
Back
Top Bottom