UK House of Lords/ House of Commons Questions

While he is of course correct, I think his tone comes across as being a point scoring smart**** in this tweet.

The point being made is, I feel, that claimants struggle to receive benefits they are entitled to and that the system is unfairly designed around a "Computer says no!" approach.

 

Question for Department of Health and Social Care
Chronic Fatigue Syndrome
Jim Shannon MP


To ask the Secretary of State for Health and Social Care, how many people have been diagnosed with myalgic encephalomyelitis/ CFS by (a) age and (b) gender in each of the last five years.

Asked 25 November 2020


Answered 4 December 2020
By Edward Argar (Conservative, Charnwood

This data is not held in the format requested.

 

That should read -
We are too incompetent to hold the data in a manner that allows us to answer fairly basic questions.

Edit - that's the govt dept that's too incompetent, not @Sly Saint. I reckon in we could arrange an ME holiday for Sly Saint & set her loose on the data she'd soon have to ship shape and properly organised.

 

That's not an appropriate use of the word format. The data don't exist, as a choice. Format has nothing to do with it. If there's anything about information is that it's very easy to transform. As long as it exists, it can be formatted easily, especially the information requested here.

This is a political response, basically GLOMAR. This is not appropriate as a response to a public health question.

 

"Marco Longhi Conservative, Dudley North
To ask the Secretary of State for Health and Social Care, if will he make an assessment of the potential merits of reclassifying (a) myalgic encephalomyelitis and (b) chronic fatigue syndrome as a disability.

• Hansard source (Citation: HC Deb, 4 December 2020, cW)

Edward Argar Minister of State (Department of Health and Social Care)
The Department, NHS England and NHS Improvement accept the World Health Organization’s classification of chronic fatigue syndrome/myalgic encephalomyelitis as a neurological condition of unknown origin, and therefore health and social care professionals are expected to manage it as such."

Good to know although it hasn't been that way in practice for a long time.

wasn't sure what the question was referring to but am guessing it might be this:

 

John Martin McDonnell Labour, Hayes and Harlington
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to increase awareness of symptoms of (a) chronic fatigue syndrome and (b) long covid.

• Hansard source (Citation: HC Deb, 15 December 2020, cW)

Nadine Dorries Minister of State (Department of Health and Social Care)
No specific assessment has been made of increasing awareness of chronic fatigue syndrome.

On 15 November 2020, the National Health Service launched a new taskforce with patients, charities, researchers and clinicians to help manage the NHS approach to ‘long COVID’. The taskforce will produce information and support materials for patients and healthcare professionals to develop a wider understanding of the condition. The full announcement is available via the following link:

https://www.england.nhs.uk/2020/11/nhs-launches-40-long-covid-clinics-to-tackle-persistent-symptoms/

 

29 Dec 2020

Baroness Scott of Needham Market Liberal Democrat
To ask Her Majesty's Government why Chronic Fatigue Syndrome (CFS) is not listed on the topics covered by the NHS Clinical Knowledge summary; who authorised the decision to combine CFS with “Tiredness/fatigue in adults”; and when that change was made.

Lord Bethell The Parliamentary Under-Secretary for Health and Social Care
The National Institute for Health and Care Excellence (NICE) Clinical Knowledge Summary Tiredness/fatigue in adults was published in October 2009 and there has been no change in the way it is titled over the subsequent period. NICE advises that the inclusion of Chronic Fatigue Syndrome (CFS) within the tiredness/fatigue topic is to ensure that clinicians will consider CFS as a potential diagnosis as early as possible in the course of care of a person presenting with symptoms of tiredness and fatigue.

In 2007 NICE published the guideline, Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. This is currently being updated and a draft guideline is out for consultation with the final guidance expected in April 2021. The CFS diagnosis and management sections in the Clinical Knowledge Summary on Tiredness/Fatigue are kept in line with NICE guidance on CFS and will be updated following publication of the new guidance if necessary.

 

Caroline Lucas Green, Brighton, Pavilion
To ask the Secretary of State for Health and Social Care, if he will make it his policy to increase provision of specialist chronic fatigue syndrome services to meet demand for these services from people living with long covid.

Nadine Dorries Minister of State (Department of Health and Social Care)
COVID-19 is a new disease and therefore it is not yet clear what the medical, psychological and rehabilitation needs will be for those experiencing long-term effects of the virus. In October 2020, NHS England announced a £10 million investment in their five point plan to support people with ‘long’ COVID-19. As part of this investment, 69 post-COVID-19 assessment service centres are now operational across England to assess people with long-term effects of COVID-19 and to direct them to effective treatment pathways. A further 12 long COVID-19 assessment service centres are expected to launch in early 2021

Care for people with chronic fatigue syndrome and myalgic encephalomyelitis is a local matter commissioned by local primary, community and secondary care services via clinical commissioning groups (CCGs). CCGs are best positioned to understand and provide for the needs of local populations.

 

Sad that she thinks this is without precedent, especially when she was given a heavy clue in the question.

I'd give her one out of three for that answer.

 

Darren Jones Chair, Business, Energy and Industrial Strategy Committee, Chair, Business, Energy and Industrial Strategy Committee
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to increase biomedical research on the causes and treatment of myalgic encephalomyelitis in the UK.

Edward Argar Minister of State (Department of Health and Social Care)
The Department funds research through the National Institute for Health Research (NIHR). In 2020, the NIHR and the Medical Research Council, through UK Research and Innovation, came together to fund the world’s largest genome-wide association study of myalgic encephalomyelitis (ME), sometimes referred to as Chronic Fatigue Syndrome (CFS). This £3.2 million study, ‘DecodeME’, will analyse samples from 20,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. DecodeME is a partnership between biomedical scientists at the University of Edinburgh and ME/CFS charities and people with lived experience of ME/CFS. It is hoped that the outcomes of this study will aid the development of diagnostic tests and targeted treatments.


@Andy

 

Copied from Covid-19 vaccines and vaccinations | Page 15 | Science for ME (s4me.info) posts 297 and 298

Written questions and answers - Written questions, answers and statements - UK Parliament

Written questions and answers - Written questions, answers and statements - UK Parliament

 

Copied from Covid-19 vaccines and vaccinations | Page 17 | Science for ME (s4me.info) post 331:

Source: UK House of Commons

Date: March 11, 2021

URL:
https://questions-statements.parliament.uk/written-questions/detail/2021-03-02/161882

Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

 

Thanks for this @MeSci. Kim Johnson is our MP, so if I can find the energy I'll write to her to at least thank her for her efforts on our behalf. Might let her know about the post code lottery aspect of getting into Group 6 as well.

 

copied from Covid-19 vaccines and vaccinations | Page 17 | Science for ME (s4me.info) post 334:

Source: UK House of Commons
Date: March 12, 2021

URL:

https://questions-statements.parliament.uk/written-questions/detail/2021-02-08/150966

Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

 

Copied from Covid-19 vaccines and vaccinations | Page 17 | Science for ME (s4me.info) post 335

Source: UK House of Commons

Date: March 12, 2021

URL:
https://questions-statements.parliament.uk/written-questions/detail/2021-03-09/165694

Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Coronavirus: Vaccination
------------------------
Navendu Mishra

To ask the Secretary of State for Health and Social Care, what
assessment he has made of the potential merits of including inclusion of
Myalgic encephalomyelitis in the group 6 specified conditions for
covid-19 vaccination; and what estimate he has made of the number of
people with that condition who have received a covid-19 vaccination.

Nadhim Zahawi

The Joint Committee on Vaccination and Immunisation (JCVI) has not
identified any robust data to indicate that, as a group, persons with
myalgic encephalomyelitis/chronic fatigue symdrome (ME/CFS) are at
higher risk of dying from COVID-19, therefore those under 50 years old
are not prioritised for phase one of the programme.

Prioritisation for Phase two has not yet been decided, but interim
advice has been published by the JVCI recommending an age-based
approach, which the Government has accepted in principle subject to
final advice. The information on estimates of people with ME/CFS who
have received a covid-19 vaccination is not held centrally in the format
requested.

(Not sure what I did differently this time!)

 

@ladycatlover it would be excellent if you (or someone on your behalf) could ask Kim to please lobby Matt Hancock direct on the postcode lottery problem?

Also Nadhim Zahawi has referred only to the ‘risk of death’, whereas the Green Books states:

“The examples above are not exhaustive, and, within these groups, the prescriber should apply clinical judgment to take into account the risk of COVID-19 exacerbating any underlying disease that a patient may have, as well as the risk of serious illness from COVID-19 itself.”

https://assets.publishing.service.g...961287/Greenbook_chapter_14a_v7_12Feb2021.pdf

 

Andrew Gwynne Labour, Denton and Reddish
To ask the Secretary of State for Health and Social Care, what discussions he has had with the Joint Committee on Vaccination and Immunisation on moving people with chronic fatigue syndrome (CFS/ME) into priority group 6 for the covid-19 vaccine.

• Tweet Share
• Hansard source (Citation: HC Deb, 24 March 2021, cW)

Nadhim Zahawi Parliamentary Under-Secretary (Department for Business, Energy and Industrial Strategy), The Parliamentary Under-Secretary for Health and Social Care
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.

 

Andrew Gwynne Labour, Denton and Reddish
To ask the Secretary of State for Health and Social Care, for what reason people with chronic fatigue syndrome (CFS/ME) are being offered the covid-19 vaccine in some areas of the country and not in others.

• Tweet Share
• Hansard source (Citation: HC Deb, 24 March 2021, cW)

Nadhim Zahawi Parliamentary Under-Secretary (Department for Business, Energy and Industrial Strategy), The Parliamentary Under-Secretary for Health and Social Care
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.

 

Kerry McCarthy Shadow Minister (Transport)
At today’s meeting of the all-party group on myalgic encephalomyelitis, we discussed the overlaps between ME and chronic fatigue syndrome and long covid. Obviously, there are some striking similarities. What assessment has the Secretary of State made of the impact that contracting covid can have on people with ME/CFS? Given their vulnerability, will he now do a bit of a U-turn and make them a priority for vaccination?

• Link to this speech In context Individually
• Tweet Share
• (Citation: HC Deb, 19 April 2021, c667)

Matthew Hancock Secretary of State for Health and Social Care
Of course, the prioritisation for vaccination when it comes to those who are vulnerable is clinically determined. I know that this question has been looked into. We are also looking into work on the links between ME and long covid, which share some similarities but are different conditions. It is an area that needs further work and further research—there is no doubt about that. If there is an update to the clinical advice on prioritisation and whether those with ME need to be in category 6 or category 4, I will update the hon. Lady. Thus far, however, we are following the clinical advice and that is the approach we have taken overall.

 

From: Dr. Marc-Alexander Fluks <fluks@combidom.com>


Source: UK House of Lords
Date: April 27, 2021
URL:
https://questions-statements.parliament.uk/written-questions/detail/2021-04-13/hl14895
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster


[Written Answers]

Chronic Fatigue Syndrome
------------------------

Baroness Scott of Needham Market

To ask Her Majesty's Government why the Department for Work and Pensions
classifies ME/CFS as a musculoskeletal disease for the purposes of
statistics and for the guidance and training of their health
professionals, rather than as a neurological disease.


Baroness Stedman-Scott

Assessment of entitlement to benefit does not depend on the condition
itself, the underlying cause or how the condition is classified, but on
the disabling effects of the condition(s) present.

The condition insight reports for Personal Independence Payment Health
Professionals state that ME/CFS is classified as a neurological
disorder; the guidance for CHDA Health Professionals who conduct Work
Capability Assessments make no reference to the classification of
ME/CFS.

The issue of classification for coding and statistical purposes has
recently been brought to our attention. In light of this we are
currently exploring moving ME/CFS from the musculoskeletal to
neurological section for coding purposes.

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