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

Eleanor said:
"What is the government doing to ensure the provision of services in areas where local integrated care boards have refused to provide them?"
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How is the NHS going to source consultants in ME/CFS when there is no speciality nor training within med schools?
How will severe patients pathways work? What departments and facilities can provide for their unique needs within the existing stock and what investment is required to ensure every locality has appropriate facilities?

Highly targeted questions pointing out the real problem and what doesn't exist and asking how its going to be fixed.
 
So, how are we going to push things forward?
Mr B wrote to the MRC and NIHR just before the " Showcase Event" and eventually received a reply from someone at the MRC, nothing from NIHR. He had asked about the meeting being recorded for circulation and it was indicated that they " would publish a written overview of the meeting shortly" which they would be happy to share. Nothing has arrived unless it is out there and I've not seen it. We haven't been able to follow up but will. Advocacy is extraordinarily difficult when you are sick and ancient and have gaps of weeks when not functioning.

I do think posing more targeted questions would be a good strategy but I don't know my MP who is a "new boy" and don't have the capacity to start from scratch in enlightening him. I do wish Sir Ed were still our MP.

Would it be a good idea to try to continue to develop ideas as @BrightCandle and @Eleanor have done for a couple of more focussed questions that couldn't be waffled away, that could be fed to receptive MPs? Maybe Tessa Munt would be interested. Maybe done by a small group starting with the suggestions above? I can't offer to be more involved I'm afraid.
 
I’d encourage people who feel they can to try to build up a relationship with their MP or someone in their MPs office. Send them letters, let them know about the issues, share your experiences. It takes time, it takes a lot of effort that could be spent on other things, so is hard for people like us, but if you can I do think it is worth it, although we also need to be realistic.

Some cynicism is entirely justified. And definitely frustration that things are not happening at the rate or with the urgency needed. Or that some charities representing us don’t have a great message.

There’s a great description of petitions I heard, which was they are pointless, except for when they give a government (or other organisation) cover for doing something they really wanted to anyway.

But that does not mean parliamentary questions, lobbying, petitions or just raising awareness with politicians is useless. Decisions are made in that House that do have an impact, either harmful or beneficial. And those decisions are made by people, people who are themselves influenced and persuaded just as all people are. So we should absolutely be making sure our representatives are aware of and as well informed on the issues as possible.

Edit: despite this encouragement I do want to make it clear that if you are not up to it, don’t feel bad and if you are and try and your MP isn’t at all receptive that’s not on you either
 
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Binkie4 said:
Would it be a good idea to try to continue to develop ideas as @BrightCandle and @Eleanor have done for a couple of more focussed questions that couldn't be waffled away, that could be fed to receptive MPs? Maybe Tessa Munt would be interested. Maybe done by a small group starting with the suggestions above? I can't offer to be more involved I'm afraid.
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I wonder if there would be any chance of getting a sympathetic MP to ask a question challenging the use of the unevidenced BACME model in clinics. I'm sure it would only be met with the usual waffle, but it would at least make the point that BACME neither serves patients nor represents us. Which may come as news to some MPs who will only ever have encountered them in the role of the good guys.
 
hotblack said:
Edit: despite this encouragement I do want to make it clear that if you are not up to it, don’t feel bad and if you are and try and your MP isn’t at all receptive that’s not on you either
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I have tried, I have fed them a variety of said questions to ask but they just aren't interested and due to the way our dumb representative system works we can't just send it to Tessa Munt or someone else on the APPG to do the representing. So alas what we have to do is share the questions between us and the idea behind the questions to those that are in consistencies that do have MPs who are part of the APPG for ME/CFS (and Long Covid) who will represent ME patients. Its all backwards but that is the archaic system we are working within!
 
BrightCandle said:
I have tried, I have fed them a variety of said questions to ask but they just aren't interested and due to the way our dumb representative system works we can't just send it to Tessa Munt or someone else on the APPG to do the representing. So alas what we have to do is share the questions between us and the idea behind the questions to those that are in consistencies that do have MPs who are part of the APPG for ME/CFS (and Long Covid) who will represent ME patients. Its all backwards but that is the archaic system we are working within!
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This
 
BrightCandle said:
I have tried, I have fed them a variety of said questions to ask but they just aren't interested and due to the way our dumb representative system works we can't just send it to Tessa Munt or someone else on the APPG to do the representing. So alas what we have to do is share the questions between us and the idea behind the questions to those that are in consistencies that do have MPs who are part of the APPG for ME/CFS (and Long Covid) who will represent ME patients. Its all backwards but that is the archaic system we are working within!
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My MP is on the APPG and I'd be happy to be part of a small group to draft a question which I could then put forward (barring unexpected events or crashes, but that's life).
 
I suspect any question put to the relevant minister about problems with clinics using unevidenced treatments would be batted back as being the concern of the NHS, NICE and the ICB's not government ministers. And you would get the usual stock answer about ICB's providing services according to local needs, and the government's delivery plan and NICE guideline and NHS training modules.

They don't do detail of treaments except if a new treatment like the obesity drugs arrive and have massive cost implications. Even there, the government's policy is over whether to allocate more funds to the NHS to pay for it, or whether to tell the NHS to ration it.
 
If AfME is responsible for advising the 'Parliamentary Champion' MPs on the questions, then they seem to be proposing that there are two separate health conditions - ME and CFS. And, unlike the UK government, they aren't using ME/CFS.
“To ask the Secretary of State for Health and Social Care, whether his Department has considered guarantees on specialist care provision for Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS) and very severe ME.”
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BrightCandle said:
And should add the big problem with this strategy is we have plenty of people with MPs who will ask the question who are far too sick to be doing it. So we end up with relatively less disabled people unable to represent because of their MP and severe people having to coordinate messaging to MPs who are most receptive.
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Given the Royal College of Physicians' Special Edition, among other things, I feel uneasy about blanket calls for more services. Yes, unless questions are more targeted, they end up just advertising things like 'the Neighbourhood Health Service' that likely has BACME all over it. Perhaps an efficient way to get better questions asked would be to contact AfME and help them?
 
Hutan said:
If AfME is responsible for advising the 'Parliamentary Champion' MPs on the questions, then they seem to be proposing that there are two separate health conditions - ME and CFS. And, unlike the UK government, they aren't using ME/CFS.



Given the Royal College of Physicians' Special Edition, among other things, I feel uneasy about blanket calls for more services. Yes, unless questions are more targeted, they end up just advertising things like 'the Neighbourhood Health Service' that likely has BACME all over it. Perhaps an efficient way to get better questions asked would be to contact AfME and help them?
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There are many problems with Neighbourhood Health Service, bringing in Commercial healthcare and insurance companies is the one that gets missed. BACME need to be investigated
 

Photo of Alison HumeAlison Hume Labour, Scarborough and Whitby​

To ask the Secretary of State for Science, Innovation and Technology, what plans her Department has to support the use of combinatorial genomic analysis techniques, such as those used by Precision Life to identify novel ME genetic associations, within government-funded research programmes.

Photo of Alison HumeAlison Hume Labour, Scarborough and Whitby​

To ask the Secretary of State for Science, Innovation and Technology, what mechanisms are in place to support collaboration between Government-funded bodies and private-sector researchers following the identification of multiple biological pathways implicated in ME by the LOCOME study.

Photo of Alison HumeAlison Hume Labour, Scarborough and Whitby​

To ask the Secretary of State for Science, Innovation and Technology, what plans her Department has to develop a long-term research strategy into under-researched health conditions that reflects the scale of emerging genetic evidence identified by private-sector research organisations, including Precision Life’s LOCOME study.

Photo of Kanishka NarayanKanishka Narayan Parliamentary Under Secretary of State (Department for Science, Innovation and Technology)​

The Medical Research Council (MRC), which is part of UK Research and Innovation (UKRI), funds a broad portfolio of health research, including researcher led proposals using combinatorial genomic analysis. MRC has prioritised research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for many years, investing over £4.65 million since 2020, and continues to welcome high quality applications in this area.

UKRI supports collaboration between Government funded bodies and private sector researchers across its councils and Innovate UK. This includes funding the LOCOME study led by Precision Life, through Innovate UK’s Advancing Precision Medicine programme, which supports the development of digital and data tools to improve diagnosis and treatment. MRC also enables academic-industry partnerships through its Industry Collaboration Framework.

UKRI does not typically maintain disease‑specific research strategies, instead providing open funding routes for the most impactful research across disciplines. Targeted work can be supported where needed. For example, in 2020, the National Institute for Health and Care Research (NIHCR), the Scottish Government and MRC funded the James Lind Alliance Priority Setting Partnership to identify ME/CFS research priorities.
 

Photo of Max WilkinsonMax Wilkinson Liberal Democrat Spokesperson (Home Affairs)​

To ask the Secretary of State for Health and Social Care, which department is responsible for making decisions and research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as part of the Final Delivery Plan.

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

The Department of Health and Social Care is responsible for the overall delivery of the final delivery plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The Department funds research through the National Institute for Health and Care Research (NIHR).

To address the breadth of the ME/CFS research challenge, the NIHR and the Medical Research Council (MRC), part of UK Research and Innovation, play complementary roles in the United Kingdom landscape by funding research across the research system, with MRC funding aetiological and early-stage translational science and NIHR funding later stage translational and applied clinical work.

The NIHR and MRC are working together to deliver the research actions outlined in the ME/CFS final delivery plan that we published in July.
 
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