UK House of Lords/ House of Commons Questions

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

Although NICE guidelines and the PACE trial remain contentious amongst some patient groups there is absolutely no doubt in my mind that the current approaches of cognitive behavior therapy (CBT) and Graded Exercise Therapy (GET) have helped and continue to help a large number of people to recover from the condition.
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?
 
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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?"
 


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)
 
https://www.theyworkforyou.com/mp/?p=10780
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.
 
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.
 
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


Public funding.

The UK Research and Innovation Gateway website (https://gtr.ukri.org/) can be used to search for funding granted from the UK’s Medical Research Council, as well as many other bodies - however it doesn’t include the National Institute for Health Research.


The results below come from searching for “chronic fatigue syndrome”, no other search term returned any results. Actual search used, https://bit.ly/2IEv06j


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Medical Research Council
Functional neurological symptoms and cortisol.

Current research studies

A Unified Mechanism for Functional Neurological Symptoms, Mark Edwards, St Georges University of London

“The aim of the work proposed here is to test a novel pathophysiological theory of functional neurological symptoms. We will build on existing work in patients with functional movement disorders and functional sensory loss to test if this theory can also provide a convincing mechanistic explanation for paroxysmal motor symptoms (non-epileptic attacks) and interoceptive symptoms (fatigue). We will combine this work with experimental studies in patients with functional motor symptoms before and after treatment. This will assess the link between change in clinical symptom severity and change in markers of our proposed pathophysiological mechanism and will demonstrate its relevance to clinical symptomatology and provide potential biomarkers for use in future therapeutic studies.”

Read more here, and a discussion thread on this project, especially on the grouping of ME/CFS with “functional movement disorders”, is here.


Glucocorticoid dynamics in health and disease, Stafford Lightman, University of Bristol


This study will “investigate the mechanisms underlying the increased mortality and morbidity in these patients [with Addison's disease, but also other conditions associated with apathy and abnormal adrenal activity such as depression, PTSD and chronic fatigue syndrome], by studying the importance of oscillating levels of cortisol both in an animal model and in man. In the animal model we will investigate the biological mechanisms through which pulsatility affects neural function both at the level of cellular function and animal behaviour. In human volunteers we will use brain scanning (fMRI) and changes in pupil size to look at the brain pathways responding to changes in cortisol pattern.”

Read more here, and a short forum discussion thread can be found here.
https://gtr.ukri.org/projects?ref=MR/R010919/1



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Economic and Social Research Council
ME as a Central Sensitivity Syndrome and as a “female-prevalent condition” in need of a “effective gender-centred psychological treatment”.

Current PhD projects

A Mixed Method Exploration of the Association between Autism and Central Sensitivity Syndromes, Sarah Grant, King’s College London


“This PhD project has several research goals; firstly, to establish whether there is an association between these illnesses ['Central Sensitivity Syndromes' (CSS) such as Fibromyalgia Syndrome (FMS) and Chronic Fatigue Syndrome (CFS)] and ASD [Autism Spectrum Disorder]; secondly, to explore whether any association is mediated by gender effects; thirdly, to look at common diagnostic experiences of people with CSS, and investigate how autism might affect the diagnostic journey; and finally, to explore how autistic traits might affect illness beliefs and management for those people with symptoms of both conditions.”

Read more here, and a forum discussion thread can be found here.


What counts as a premenstrual symptom? Patient and expert health professional perspectives on PMS (Premenstrual Syndrome), Sally King, King’s College London

“The main aim of this research is to explore how and why certain premenstrual symptoms achieve relative prominence over others, by examining 'expert' clinical constructions of PMS, alongside the experiences and perspectives of 'PMS sufferers'. It builds on the work of Prof. Jane M Ussher, in particular, whose research examines the gendered factors underlying the psychological symptoms of PMS, and identity in relation to the reproductive body.


Just as Ussher went on to develop an effective gender-centred psychological treatment for PMS, it is hoped that this research will also directly contribute to the integration of research and clinical practice. Especially in relation to the diagnosis and treatment of PMS, and associated female-prevalent conditions, such as; anxiety, asthma, chronic fatigue syndrome, depression, IBS (Irritable Bowel Syndrome), and migraine.”

Read more here, and a, very short, forum discussion thread can be found here.


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National Institute for Health Research

The National Institute for Health Research (not to be confused with the USA-based NiH) does not seem to have a similar site, or option on their website, to allow for easy searches of funded research; my Google skills were insufficient to reveal anything of use, although there is, undoubtedly, research ongoing - past experience thought would strongly suggest that this will be of the psychosocial persuasion.
 
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.
MRC CFS/ME Expert Group
The group is chaired by Professor Stephen Holgate, chair of our Population and Systems Medicine Board. The group brings together leading experts in the field of CFS/ME and from associated fields that may be involved in the underlying mechanisms of CFS/ME, in addition to representatives from the charity sector.

Click on a member for their declaration of interest.

  • Professor Stephen Holgate - University of Southampton (Chairman)
  • Professor Jill Belch - University of Dundee
  • Dr Esther Crawley - University of Bristol
  • Professor Philip Cowen - University of Oxford
  • Professor Malcolm Jackson - University of Liverpool
  • Dr Jonathan Kerr - St George’s University of London
  • Professor Ian Kimber - University of Manchester
  • Professor Hugh Perry - University of Southampton
  • Dr Derek Pheby - National CFS/ME Observatory
  • Professor Anthony Pinching - Peninsula Medical School
  • Dr Charles Shepherd - ME Association
  • Sir Peter Spencer - Action for ME
  • Professor Peter White - Bart’s and the London School of Medicine and Dentistry


it also says
MRC-funded research projects
The Excel and CSV files available below provide information on the MRC’s expenditure on research into CFS/ME from 2004/05 to 2016/17. This information will be updated yearly in September.
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/
 
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Oct 27 2020
https://www.theyworkforyou.com/mp/?p=25917
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.
 
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