UK House of Lords/ House of Commons Questions

https://www.parliament.uk/business/...s/written-question/Commons/2018-09-03/169455/

Alison Thewliss

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support biomedical research on myalgic encephalomyelitis [169455].

 

https://www.parliament.uk/business/...s/written-question/Commons/2018-09-04/170278/

Kevin Brennan

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 4 June 2018 to Question 147821, on Chronic Fatigue Syndrome, what plans he has and what recent steps he has taken to expand this funding in the future [170278].

 

Thank you @MeSci , good to see some MP’s are quick off the mark this week.

Alex Chalk newsletter this week advises:

“I have been promoted by the Prime Minister to the post of Parliamentary Private Secretary (PPS) to the Health Secretary, Rt Hon Matt Hancock MP. I am sorry to be leaving my role as PPS to the junior Education ministers, but I look forward to supporting the work of the NHS - and advancing the cause of Cheltenham General Hospital - to the best of my ability”

He has been very supportive of M.E. and us, so far, and we (a small group of us) will stay closely in touch with him.

 

Not my link, I'm afraid @NelliePledge

 

I would like to think that when Matt Hancock answers these questions, he will have in mind the surgery meeting my wife and I had with him back in June. It seemed to go well, but not holding our hopes up.

 

A plot? You mean there's a plot?! Where did it go? Whose plotting what? Is it even worth finding?

 

@Barry , we can't continue with the plot if people keep mixing us up. They might work out that we are in fact the same person. Or, in fact, that there are only really three people behind all the different "faces" on this website.

It's all part of the quantum theoretical proposal that every particle on earth could simply be just one particle zipping back and forth in time, filling the whole universe.

That is, as opposed to all the other highly realistic quantum proposals, like Schrodinger's Cat.

The question is, has anyone ever actually observed Barry and me in a simultaneous state?

 

Has anyone ever seen how very tiny we really are?

 

Source: UK House of Commons

Date: September 11, 2018

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-09-03/169455/

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

[Written Answers]

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

Alison Thewliss

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support biomedical research on myalgic encephalomyelitis [169455].

Caroline Dinenage

The Department's National Institute for Health Research (NIHR) recognises that myalgic encephalomyelitis (ME) is a debilitating condition. The NIHR is speaking with the Chronic Fatigue Syndrome/ME Research Collaborative and patient representatives about how best we can support a joined up approach to high quality research into this complex disorder.

The NIHR welcomes funding applications for research into any aspect of human health, including ME; it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.

 

Was it @Barry whose MP has health role?

 

It ceased in about 2015... at Bath. I spoke to the guy Simon M Collin who oversaw it and he has moved on to NHS England I believe, Departed from the field......
/https://www.hra.nhs.uk/planning-and...s-after-treatment-by-nhs-specialist-services/
CFS/ME in the NHS: outcomes after treatment by NHS specialist services

• Research type
  Research Study
  
  
• Full title
  CFS/ME in the NHS: outcomes after treatment by NHS specialist services for adults with Chronic Fatigue Syndrome (CFS/ME)
  
  
• IRAS ID
  149792
  
  
• Contact name
  Simon Collin
  
  
• Contact email
  simon.collin@bristol.ac.uk
  
  
• Sponsor organisation
  North Bristol NHS Trust
  
  
• Research summary
  Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is defined as persistent or recurrent debilitating fatigue that is not life-long, the result of ongoing exertion, alleviated by rest, or explained by other conditions, and which results in a substantial reduction in activity. CFS/ME imposes a huge burden on patients and on their carers and families, Adults who attend NHS specialist CFS/ME services have been ill for a median duration of 3 years, and half of those who were employed at the onset of their illness have ceased working. Adult population prevalence estimates for CFS/ME range from 0.2% to 2.6%, depending on case definition and study methodology.
  
  Approximately 9,000 adults are assessed annually by NHS specialist CFS/ME services in England, of whom approximately 78% (range 60-100%) are diagnosed with CFS/ME. These specialist services use a range of treatments, with little or no standardisation across the NHS. The extent to which patients recover from their illness and are able to return to normal levels of activity are unknown. Some of the economic costs of CFS/ME have been quantified, but the cost-effectiveness of specialist services has not been investigated.
  
  This research study will use data collected from patients diagnosed with CFS/ME who receive treatment from 10 NHS specialist services and 2 qualified providers. The aim of the study is to describe variation in treatment programmes, to investigate whether NHS treatments for CFS/ME lead to long-term improvements in health and wellbeing, and to investigate the relative cost-effectiveness of packages of care provided by NHS specialist CFS/ME services. This study is based on the CFS/ME National Outcomes Database (NOD), into which routinely-collected data from NHS specialist CFS/ME services have been entered since 2006 for the purpose of service evaluation.
  
  
• REC name
  North West - Lancaster Research Ethics Committee
  
  
• REC reference
  14/NW/0242
  
  
• Date of REC Opinion
  14 Apr 2014
  
  
• REC opinion
  Favourable Opinion

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We are still testing the new H

 

Yes, Matt Hancock. Disappointed by the nebulous response, but not surprised.

 

House of Commons question on ME/cfs (13.09.2018 )

https://www.youtube.com/watch?v=FvO7AU3uLCA

eta: good to see more MPs chiming in with asking for a full debate in the chamber of the HofC

 

Looks very promising but I could only get to see 49 seconds of this on YouTube?

Was there more?

I thought there had already been a Westminster Hall debate?

Does anybody know if there will be a full debate in The House of Commons?

Or has anybody got any ideas about what we can do to encourage our MPs to encourage a full debate in House of Commons?

 

Link it to their allowances?