UK House of Lords/ House of Commons Questions

This x10

 

Caroline Lucas asking a pointless and unwanted question. Wonder if Colin Barton has been on to her again.

https://www.parliament.uk/business/...ts/written-question/Commons/2020-03-10/27580/

 

Great. I know @MeSci wrote to her before explaining the issues and got the brush off.

As she's taking an interest maybe we should invite her here to discuss the issues?

Edit - that "Great" was sarcastic by the way. More clinics at best not helping much at worst permanently harming people is all we need.

 

Do we know if she's ever been involved in the APPG for ME, given that she is still listed as a patron of the Sussex & Kent ME Association?

 

And I don't think she attended any of the 'recent' debates either, unfortunately, as she might have actually learnt something.
If anyone is thinking of writing to her again I think maybe the quote from Colin Barton

taken from their website.

the Parliamentary briefing doc
http://y9ukb3xpraw1vtswp2e7ia6u-wpengine.netdna-ssl.com/wp-content/uploads/2015/0

and suggest that maybe she might like to have a chat with Carol Monaghan on the subject?

 

Paul Blomfield Shadow Minister (Exiting the European Union)
To ask the Secretary of State for Work and Pensions, what recent assessment she has made of the adequacy of personal independence payment evaluation criteria for evaluating (a) chronic fatigue syndrome, (b) fibromyalgia and (c) other chronic illnesses.

Justin Tomlinson The Minister of State, Department for Work and Pensions
All health professionals carrying out assessments are clinically qualified and registered practitioners in their own field. DWP requires health professionals to have a broad training in disability analysis as well as awareness training in specific conditions, which includes chronic fatigue syndrome, fibromyalgia and other chronic illness.

The PIP consultation is not a medical assessment requiring the health professional to diagnose a condition or its severity and recommend treatment options. Instead it requires the assessor to look at the impact of conditions and impairments on an individual’s daily life. This helps ensure that assessment reports are fit for purpose, clinically justified and sound, and provide sufficient information for the department to make a reasonable decision on entitlement to benefit.

 

Andrew Gwynne Labour, Denton and Reddish
"On 5 March, I started to feel unwell. A week later, I was in self-isolation with suspected covid-19. The reason I mention this, Mr Speaker, is that the virus passed, but the illness did not. It is now well known and well recorded that many end up with a debilitating chronic post-covid fatigue. I am on week 16 in a very large group of people now known as long covids. Can we have a statement or a debate on long covid to ascertain what research the Department of Health is carrying out into this new syndrome and the possible longer-term impact covid-19 may have on a growing number of the public’s health?"

 

https://twitter.com/user/status/1280810821745065984


Question asked:
Department of Health and Social Care

70531
To ask the Secretary of State for Health and Social Care, whether the NICE guidance on chronic fatigue syndrome/myalgic encephalomyelitis will be updated to remove graded exercise in response to the increasing numbers of patients with fatigue symptoms after a diagnosis of covid-19.

(Also posted in the thread Possibility of ME or PVFS after COVID-19 here)

 

Gregory Campbell Shadow DUP Spokesperson (International Development), Shadow DUP Spokesperson (Cabinet Office)
To ask the Secretary of State for Health and Social Care, if he will make an assessment of the implications for his policy on ME funding of trends in the level of post-viral fatigue syndrome.
July 14 2020

Helen Whately Minister of State (Department of 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.

 

Paul Beresford Conservative, Mole Valley
To ask the Secretary of State for Health and Social Care, how much Government funding was allocated to biomedical research into myalgic encephalomyelitis in the financial years (a) 2017-18, (b) 2018-19 and (c) 2019-20.

Helen Whately Minister of State (Department of Health and Social Care)
The following table shows how much Government funding was allocated to biomedical research into myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS) for financial years 2017-18, 2018-19 and 2019-20.

Financial Year £

2017-18 226,470

2018-19 396,467

2019-20 443,719

In addition to the funding set out above, the National Institute for Health Research, funded through the Department, and the Medical Research Council have recently announced a £3.2 million award to fund research into potential genetic connections to ME/CFS. The project will analyse samples from 20,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.

 

I wonder which study or studies were they or were they including all research they funded.

 

https://www.s4me.info/threads/what-...rocess-as-of-end-june-2019.10232/#post-180879

 

So the real answer is 0. None of those have anything to do with ME.

As expected, but it would be really great if people didn't lie about it. It makes them both wrong and assholes.

 

Is there anything women can suffer from in health terms these days that isn't automatically assumed to be a mental illness?

And I think my husband would be astonished to be told that his life-long asthma was a "female-prevalent" condition which is basically a mental illness.

 

I just did a quick search on that database (https://gtr.ukri.org/search/) using 'chronic fatigue':
and 5 projects came up:

same search but with 'chronic fatigue syndrome' and you get the above minus the Military one.

funding does not appear to feature on all of them (pretty rubbish database).

Also isn't it time that this page on MRC CFS/ME funding was properly updated? the 'old' CMRC 'team' are still up there.

it also says

I can't find anything more up to date.

eta: forgot to post the website link
https://mrc.ukri.org/funding/scienc...medicine/our-science-and-contacts-psmb/cfsme/

 

None of the names appear to be clickable on the site, despite the prior "Click on a member for their declaration of interest."

 

Oct 27 2020

Marco Longhi Conservative, Dudley North
To ask the Secretary of State for Work and Pensions, what assessment she has made of the potential merits of reclassifying (a) myalgic encephalomyelitis and (b) chronic fatigue syndrome as a disability rather than as an illness for the purposes of (a) benefit assessments and (b) employee rights.

Justin Tomlinson The Minister of State, Department for Work and Pensions
Entitlement to health and disability-related benefits is determined by the functional effects of a person’s disability or health condition. Classification of the disability or condition is irrelevant for the purposes of benefit assessment.

With regard to employee rights, though they are not automatically treated as a disability under the Equality Act 2010, people with myalgic encephalomyelitis (ME) and chronic fatigue syndrome can be treated as disabled depending upon the effect it has on their daily life. ME is specifically listed amongst “impairments with fluctuating or recurring effects” in the 2010 Act Guidance document

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/85010/disability-definition.pdf.

Any employment rights would then flow from being classified as disabled under the Equality Act 2010.

 

https://twitter.com/user/status/1334118904818495488

 

I’m afraid I find it a bit cringe-worthy due to this:
https://twitter.com/user/status/1334137727491727362

https://twitter.com/user/status/1334205679071014913