UK House of Lords/ House of Commons Questions

response June 1

Gillian Keegan Minister of State (Department of Health and Social Care)
The Department has asked the UK Clinical Research Collaboration to convene a subgroup on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) with a range of stakeholders, including research funders, to ensure high quality applications for research into ME/CFS and support the research community to build capacity and capability.

On 12 May 2022, we announced the intention to develop a cross-Government Delivery Plan for ME/CFS in England. The delivery plan will build on the recommendations of the ME/CFS Priority Setting Partnership and the recently updated guideline from the National Institute for Health and Care Excellence to ensure that people living with ME/CFS have the appropriate support.

NHS England and NHS Improvement are establishing a task and finish group to produce guidance on the provision of high-quality services for people living with long term pain by September 2022. The guidance is aimed at integrated care systems to provide core principles which can be used to inform the development of local models of care to support people living with chronic pain.

 

Finally got around to emailing my MP asking her to submit a [UK Westminster] Parliamentary Question - here's the email*. Hopefully my MP will assist, if not then I'll see if there's another MP who will.

*
"Hi Claire [Hanna],
thank you for asking a Written Parliamentary Question (last June) on myalgic encephalomyelitis [ME], chronic fatigue syndrome [CFS] - Note 1.

While the Answer (wrongly) stated that "all the studies funded [by NIHR & MRC - Note 2] use appropriate outcome criteria to assess and measure their impact" the question did provide a useful way to highlight that NICE had found that "The majority of the evidence [funded studies] was of low and very low quality." - Note 3.
Typically these studies were unblinded and use subjective outcome criteria i.e. questionnaires rather than objective outcome criteria such as activity monitoring [FitBit type devices], attendance at school (for adolescents), hours worked etc. In essence the "researchers" are able to claim improvement from e.g. CBT, and exercise, by using questionnaires - objective outcome criteria show no improvement or, in the case of exercise, even harm.

The new Secretary of State for Health and Social Care (Sajid Javid) has a family member with ME/CFS and he recently spoke in the House of Commons regarding his strategy to address this debilitating illness - Note 4. We now have an opportunity (particularly while Sajid is in post!) to try to bring an end to the public funding of flawed research which e.g. has been used to justify harmful "treatments" i.e. graded exercise therapy. Here's a draft Parliamentary Question, grateful if you could ask it and if you aren't able to then please get back to me and I'll try to work with the local charities (cc) to identify another MP.

Draft Parliamentary Question:
"The Secretary of State for Health's recent statement to the House, on ME/CFS, has been widely welcomed within the ME/CFS community. In keeping with the commitments in this statement, will he now write to NIHR, and MRC, to highlight the need to ensure that all funded ME/CFS research must be high quality - particularly that unblinded studies require objective outcome criteria such as activity monitoring using wearable digital sensors?"

The peak incidence for developing ME/CFS is teenage years and 70% of people with ME/CFS are female; there are no treatments and generally people do not (currently) recover. So. this is particularly relevant to women. In addition, many experts, such as (US) National Institute for Health neurovirologist Dr. Avindra Nath, consider that "many cases of Long Covid strongly resemble ME/CFS" - Note 5. Thus the number of people affected [ME/CFS - estimated 13K in the North] is likely to increase substantially.

Thank you in advance for your assistance,
Xxxx


Note 1
"Question:
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that clinical studies for (a) ME, chronic fatigue syndrome and (b) long-covid are conducted using appropriate outcome criteria.

Answer
The National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) have invested in research into myalgic encephalomyelitis, chronic fatigue syndrome and ‘long’ COVID-19. All research commissioned by the NIHR and UKRI is subject to robust peer review processes to ensure that all the studies funded use appropriate outcome criteria to assess and measure their impact.
[https://questions-statements.parliament.uk/written-questions/detail/2021-06-29/24368]
***National Institute for Health Research (NIHR) is funded through the Department of Health

****UK Research and Innovation (UKRI) is a non-departmental public body of the Government of the United Kingdom that directs research and innovation funding, funded through the science budget of the Department for Business, Energy and Industrial Strategy."
Note 2 -
MRC (Medical Research Council).
National Institute for Health Research (NIHR).

Note 3
Page 317 - NICE Evidence Review for new Guideline on ME/CFS - [https://www.nice.org.uk/guidance/ng206/documents/evidence-review-7]

Note 4
Sajid Javid's statement, in the House of Commons, on World ME Day (12th May). Search the "Whole Day" PDF for (EDIT) "Sajid"!
https://hansard.parliament.uk/pdf/commons/2022-05-12

Note 5
https://www.meaction.net/2022/05/04/nih-research-update/

 

An excellent letter/draft question, @FMMM1 I am most impressed how succinctly you got the point across.

 

Lets hope the question gets asked, and, more importantly, that Sajid Javid does write to the funding bodies to highlight our concerns - might help to etch it into their memories!

Can't find a link but Jonathan summed it along the lines ---- now children ---- all together --- unblinded studies require ----

 

Just wondering if I should have added "Long Covid" i.e.
"will he now write to NIHR, and MRC, to highlight the need to ensure that all funded ME/CFS [, and Long Covid,] research must be high quality -".

Thoughts?

 

If Javid takes action on this it would make sense to also try to stop a rush of uninterpretable Long Covid research using unblind trials with subjective outcomes.

 

I've emailed my MP (Claire) to suggest including Long Covid:
"Claire,
further thought. Some of those involved in the flawed ME/CFS "research" have patented "treatments" based on these flawed studies - benefitting twice from their low quality research. They've now started targeting Long Covid i.e. suggesting the use of CBT & exercise for Long Covid, even though there is no evidence to support this.
The question could be tweaked to refer to ME/CFS & Long Covid:
Draft Parliamentary Question:
"The Secretary of State for Health's recent statement to the House, on ME/CFS, has been widely welcomed within the ME/CFS community. In keeping with the commitments in this statement, will he now write to NIHR, and MRC, to highlight the need to ensure that all funded ME/CFS [and indeed Long Covid] research must be high quality - particularly that unblinded studies require objective outcome criteria such as activity monitoring using wearable digital sensors?"

 

Caroline Lucas Green, Brighton, Pavilion
To ask the Secretary of State for Health and Social Care, with reference to the Written Statement of 12 May 2022, HCWS23 on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Announcements, whether representatives of the British Association of Clinicians in ME/CFS will be attending his forthcoming roundtable; and if he will make a statement.

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• Hansard source (Citation: HC Deb, 15 June 2022, cW)

Gillian Keegan Minister of State (Department of Health and Social Care)
The roundtable on research priorities for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) took place on 9 June. It was attended by members of the academic community, research charities and people with lived experience. The discussion will inform the newly convened UK Clinical Research Collaboration ME/CFS research subgroup. A representative from the British Association of Clinicians in ME/CFS will participate in this subgroup.

 

I think that question from Caroline Lucas was instigated by the Sussex ME/CFS Society (Lucas is a Patron), the BPS-supporting Sussex Society are members of the British Association of Clinicians (BACME). Are BACME angling for power inside the new Javid ME group? As a vehicle for the BPS? Just wondering.


https://www.theyworkforyou.com/wrans/?id=2022-06-07.13689.h&s=speaker:24910#g13689.q0

 

I can't keep all those organizations apart. BACME was pretty bad for us too as an organization, wasn't it?

 

Yes, a BPS oriented training org for professionals. BACME (British Association of Clinicians in ME) made a reasonable sounding statement after NICE was published. But not an org we can trust.

 

Holly Mumby-Croft Conservative, Scunthorpe
To ask the Secretary of State for Health and Social Care, what steps he is taking to improve awareness among NHS staff of the (a) symptoms and (b) treatment of Myalgic Encephalomyelitis.

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• Hansard source (Citation: HC Deb, 21 June 2022, cW)

Gillian Keegan Minister of State (Department of Health and Social Care)
On 12 May 2022, we announced the intention to develop a cross-Government delivery plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for England, which will include a theme on awareness and the education of staff. The delivery plan will align with the work of the National Institute for Health and Care Excellence (NICE), which published a guideline for health and social care professionals on the diagnosis and management of ME/CFS in October 2021 and a guideline implementation statement in May 2022. Whilst NICE guidelines are not mandatory, clinicians and commissioners are expected to take this guidance fully into account and ensure implementation over time. NICE promotes its guidance online and via newsletters and other media.

 

Graded Exercise, under whatever new name the clinics/PTs/ OTs/psychotherapists have devised for it - graded pacing/ graded activity/pacing up/ etc - must stop NOW, not in a few months time.

 

Vicky Foxcroft Shadow Minister (Work and Pensions)
To ask the Secretary of State for Health and Social Care, what (a) organisations and (b) individuals his Department has consulted as part of the development of the delivery plan on myalgic encephalomyelitis and chronic fatigue syndrome.

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• Hansard source (Citation: HC Deb, 5 August 2022, cW)

Gillian Keegan Minister of State (Department of Health and Social Care)
We are currently unable to provide this information requested as it relates to the formulation of Government policy. However, to date we have engaged people with lived experience of those with myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) and carers, staff working in specialist ME/CFS services, relevant charities, other specialist organisations, academic experts, professional membership organisations, other relevant bodies and representatives from the devolved administrations and other Government departments. Further information will be provided in due course.

 

Alex Sobel Shadow Minister (Environment, Food and Rural Affairs)
To ask the Secretary of State for Work and Pensions, whether she has plans to revise the assessment process for Personal Independence Payment to make it more accessible for those who live with ME or CFS by ensuring assessors are specially trained to understand the condition.

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• Hansard source(Citation: HC Deb, 27 September 2022, cW)

Victoria Prentis The Minister of State, Department for Work and Pensions[/paste:font]
Assessment providers are required to ensure that all health professionals (HPs) carrying out Personal Independence Payment (PIP) assessments have training and knowledge of the clinical aspects and overall functional effects of a wide range of health conditions and impairments. The department does not believe that it is necessary for the provider to deploy HPs who are specialists in the specific conditions or impairments of the individuals they are assessing. Instead, the focus is on ensuring that HPs are experts in disability analysis, emphasising on the effects of health conditions and impairments on the claimant's daily life.

HPs can access a wide range of clinical resources to research any conditions presented. This includes evidence-based protocols, e-learning modules or case studies, as well as keeping knowledge up to date through Continuous Professional Development (CPD). Both PIP providers have a condition insight report on Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), and CPD modules for their HPs on the condition.

Claimants with ME/CFS are able to access PIP in the same way as other people with long-term health conditions or disabilities. DWP is committed to improving our services and works continuously with providers to improve the assessment process. The Shaping Future Support: The Health and Disability Green Paper, explored how the welfare system can better meet the needs of claimants now and in the future, by improving claimant experience of our services, enabling independent living, and improving employment outcomes. We are considering all the responses to the Green Paper proposals and are considering what future policy changes might look like. These will be set out in the White Paper later this year.

 

Vicky Foxcroft Shadow Minister (Work and Pensions)
To ask the Secretary of State for Health and Social Care, if her Department will take steps to collect data on the number of cases of myalgic encephalomyelitis that have been triggered by a Covid-19 infection.

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• Hansard source(Citation: HC Deb, 18 October 2022, cW)

Will Quince Minister of State (Department of Health and Social Care)
The Department does not intend to collect this data.

 

Question in the House of Lords.

Baroness Kennedy of Cradley

"To ask His Majesty's Government what assessment they have made, if any, of the work by Precision Life into possible genetic risk factors associated with chronic fatigue syndrome."

Answer

Lord Markham

"No specific assessment has been made. However, we are funding research to understand the genetic risk factors relating to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The National Institute for Health and Care Research and the Medical Research Council fund a £3.2 million study, ‘DecodeME’, to analyse samples from 25,000 people with ME/CFS to identify any genetic differences which may indicate underlying causes or an increased risk of developing the condition."

https://questions-statements.parliament.uk/written-questions/detail/2022-10-11/HL2487

 

Lloyd Russell-Moyle Labour/Co-operative, Brighton, Kemptown
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 22 June 2022 to Question 18974 on Chronic Fatigue Syndrome, what progress his Department has made on the Cross-Government Delivery Plan on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.

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• Hansard source(Citation: HC Deb, 31 October 2022, cW)

Helen Whately Minister of State (Department of Health and Social Care)[/paste:font]
The Department of Health and Social Care has indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.

 

If a post is going to be filleted to the point that nothing meaningful remains, perhaps the whole thing should go.