UK House of Lords/ House of Commons Questions

in answer to

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-05-17/145353/

Carol Monaghan

To ask the Secretary of State for Health and Social Care, when he plans to respond to the letter from the hon. Member for Glasgow North West dated 25 April 2018 on myalgic encephalomyelitis [145353].

Steve Brine

The Parliamentary Under Secretary of State (Lord O'Shaughnessy) responded to the hon. Member on 21 May.

(Don't ask me about this - I am flummoxed!)
 
MeSci said:
in answer to

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-05-17/145353/

Carol Monaghan

To ask the Secretary of State for Health and Social Care, when he plans to respond to the letter from the hon. Member for Glasgow North West dated 25 April 2018 on myalgic encephalomyelitis [145353].

Steve Brine

The Parliamentary Under Secretary of State (Lord O'Shaughnessy) responded to the hon. Member on 21 May.

(Don't ask me about this - I am flummoxed!)
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Well, I assume that just means that he replied 4 days after having been reminded that he hadn't replied.
 
MeSci said:
Source: UK House of Commons
There is a better laid-out version of this here: http://www.meassociation.org.uk/2018/05/monaghan-pmq-research-funding-23-may-2018/
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Sly Saint posted this one up thread.

Sly Saint said:
Reply to Carol Monaghans questions:



(sorry the tables went a bit squiffy.)

eta: am not sure if all of this is 'biomedical' as we understand it(?)

eta2: available on Hansard https://www.parliament.uk/business/...s/written-question/Commons/2018-05-17/145357/
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I think our opinion is that we have a different opinion here on what biomedical means than the government does - I hope Carol follows that point up.
 
These amounts of money have to be looked at carefully. When other MPs have questioned this in the past, a few non-biomedical studies have crept in, and sometimes the research is more into chronic fatigue than ME. NIHR have always taken the stance that they provide facilities for research, but I don't know whether they charge for the services, in which case it is hardly fair to count it.

My detailed research only really runs up to 2012, and I added on subsequent amounts as I heard of them, which is why my estimates are approximate. In the period prior to that, the MRC spending comes to about £10 million and NIHR to zero working back to 1980.

Even if you accept all their quotes in this reply, it only comes to a couple of million pounds, so to be honest, it isn't worth digging into the details. In no way do they represent a fair rating at the moment, much less compensate for a lack of earlier spending.

The standard defence from the MRC is that they don't get enough applications of suitable quality. This could well be true, but is more likely to be a reflection of research centres directing good researchers away from ME partly because of its reputation, and partly because the MRC has a history of not funding biomedical studies unless their arm is twisted.
 
Source: UK House of Commons

Date: June 4, 2018

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-05-24/147821/

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

[Written Answers]

Chronic Fatigue Syndrome (asked by Kevin Brennan of Cardiff West)
------------------------

To ask the Secretary of State for Health and Social Care, what funding his Department has allocated to support research into treatment for myalgic encephalomyelitis in each of the last five years; and what plans he has to allocate further funding for such research [147821].

Caroline Dinenage

The following table shows information provided by the National Institute for Health Research (NIHR) on Departmental programme research funding for myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), over each of the last five years. It is not possible to disaggregate funding for research into treatments specifically but further information on this research is available through the NIHR
Journals Library at the following link: https://www.journalslibrary.nihr.ac.uk/programmes/

Financial Year Pounds
2013-14 561,950
2014-15 426,055
2015-16 475,676
2016-17 554,785
2017-18 464,902

In terms of future research, the NIHR recognises that CFS/ME is a debilitating condition and is speaking with the UK CFS/ME Research Collaborative and patient representatives about how best to 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 CFS/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.
 
Source: UK House of Lords

Date: June 5, 2018

URL:
https://www.parliament.uk/business/...nts/written-question/Lords/2018-05-22/HL8135/

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

[Written Answers]

Mental Health Services
----------------------

The Countess of Mar

To ask Her Majesty's Government, further to the Written Answer by Lord O'Shaughnessy on 15 May (HL7468), upon what scientific evidence the promotion of cognitive behaviour therapy and graded exercise therapy in the Improving Access to Psychological Therapies programme is based; and what assessment they have made of recovery rates for patients with myalgic encephalomyelitis or chronic fatigue syndrome from pilot programmes of such therapies [HL8135].

Lord O'Shaughnessy

The inclusion of these therapies is based on National Institute for Health and Care Excellence (NICE) guidance. NICE is the independent expert body responsible for developing robust, evidence based guidance for the National Health Service. In 2007, NICE published a guideline on the management of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adults and children that sets out best practice on the treatment and support of patients. The guidance recommended cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as appropriate treatments for mild to moderate CFS/ME, in line with the best available evidence from eight randomised controlled trials. A copy of the guidance, Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management, is attached.

Information concerning the assessment of recovery rates for patients with CFS/ME accessing CBT or GET through Improving Access to Psychological Therapies services is not available.

HL8135 NICE Guidance CFS ME 2007

http://qna.files.parliament.uk/qna-attachments/909640/original/HL8135 NICE Guidance CFS ME 2007.pdf
 
Source: UK House of Commons

Date: June 11 2018

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-06-01/148978/

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

[Written Answers]

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

Kate Osamor

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to raise awareness of myalgic encephalomyelitis among the public and medical practitioners [148978].

Steve Brine

There is information on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) for both healthcare professionals and the general public via the NHS Choices website. Further information is also provided in the National Institute for Health and Care Excellence (NICE) clinical guideline on CFS/ME, which is provided in formats suitable for both professionals and the public. Both the NHS Choices and NICE guidance can be found at the following links:

http://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

http://www.nice.org.uk/guidance/cg53

Education and training is also an important feature in building the awareness of clinical professionals. In terms of education and training, the General Medical Council sets out the knowledge, skills and behaviours that new United Kingdom medical graduates must be able to demonstrate and Royal Medical Colleges, such as the Royal College of General Practitioners (RCGP), set the standards for postgraduate medical education in general practice. General practice is where most patients with CFS/ME are likely to be managed, and the condition is identified as a key area of clinical knowledge in the RCGP Applied Knowledge Test (AKT) content guide. The AKT is a summative assessment of the knowledge base that underpins general practice in the United Kingdom within the context of the National Health Service and is a key part of GPs' qualifying exams. In addition, the RCGP offers a free online e-learning course for clinicians which covers the diagnosis treatment and care of patients with CFS/ME.

Once fully qualified, clinicians are responsible for ensuring their own clinical knowledge remains up-to-date and for identifying learning needs as part of their continuing professional development. This activity should include taking account of new research and developments in guidance, such as that produced by NICE.
 
Source: UK House of Lords

Date: June 20, 2018

URL:
https://www.parliament.uk/business/...nts/written-question/Lords/2018-06-07/HL8447/

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

[Written Answers]

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

The Countess of Mar

To ask Her Majesty's Government, further to the Written Answer by Lord O'Shaughnessy on 5 June (HL8135), what assessment they have made of the ethicality of the continued recommendation of graded exercise therapy and cognitive behavioural therapy to patients with myalgic encephalomyelitis or chronic fatigue syndrome, following scientific research demonstrating that such therapies are not effective and may harm patients with that illness, and the imminent update of NICE guideline CG53, published in 2007 [HL8447].

Lord O'Shaughnessy

We are aware that there are concerns that more recent data and analysis suggests graded exercise therapy (GET) and cognitive behavioural therapy (CBT), which are recommended by the National Institute for Health and Care Excellence (NICE), for patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) might not be as effective as has been found by previous trial results. It is important that all the evidence, including new evidence, is looked at closely. We welcome NICE's decision to update its clinical guideline on CFS/ME and to examine the new analysis of the evidence base supporting the use of CBT and GET. Updated NICE guidance is planned for publication in 2020.

It is important to highlight that the current NICE CFS/ME guideline acknowledges that there is no one form of treatment to suit every patient and that treatment and care should take into account the personal needs and preferences of the patient. NICE also makes clear that, in common with all people receiving care in the National Health Service, those with CFS/ME have the right to refuse or withdraw from any component of their care plan.
 
MeSci said:
Source: UK House of Lords

Date: June 20, 2018

URL:
https://www.parliament.uk/business/...nts/written-question/Lords/2018-06-07/HL8447/

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

[Written Answers]

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

The Countess of Mar

To ask Her Majesty's Government, further to the Written Answer by Lord O'Shaughnessy on 5 June (HL8135), what assessment they have made of the ethicality of the continued recommendation of graded exercise therapy and cognitive behavioural therapy to patients with myalgic encephalomyelitis or chronic fatigue syndrome, following scientific research demonstrating that such therapies are not effective and may harm patients with that illness, and the imminent update of NICE guideline CG53, published in 2007 [HL8447].

Lord O'Shaughnessy

We are aware that there are concerns that more recent data and analysis suggests graded exercise therapy (GET) and cognitive behavioural therapy (CBT), which are recommended by the National Institute for Health and Care Excellence (NICE), for patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) might not be as effective as has been found by previous trial results. It is important that all the evidence, including new evidence, is looked at closely. We welcome NICE's decision to update its clinical guideline on CFS/ME and to examine the new analysis of the evidence base supporting the use of CBT and GET. Updated NICE guidance is planned for publication in 2020.

It is important to highlight that the current NICE CFS/ME guideline acknowledges that there is no one form of treatment to suit every patient and that treatment and care should take into account the personal needs and preferences of the patient. NICE also makes clear that, in common with all people receiving care in the National Health Service, those with CFS/ME have the right to refuse or withdraw from any component of their care plan.
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Wow that is such a weak response - obviously backing them in to a corner - I imagine they had to have meetings to work out what they could come up with to make it look like an attempt to answer the question and hopefully seeing the wall is being undermined is sending people off to have to think about how long they are prepared to keep supporting PACE
 
Source: UK House of Commons

Date: July 4, 2018

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-06-26/157851/

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

[Written Answers]

Chronic Fatigue Syndrome: Medical Treatments
--------------------------------------------

Thelma Walker

To ask the Secretary of State for Health and Social Care, whether his Department plans to review NICE guidelines on the treatment of myalgic encephalomyelitis; and if he will make a statement [157851].

Steve Brine

The National Institute for Health and Care Excellence (NICE) is an independent body and is responsible for determining whether its guidance should be updated to take into account new evidence. NICE is currently updating its clinical guideline on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis and is consulting stakeholders on a draft scope for the guideline update.

(Not sure why people keep asking similar questions - to let the Govt. know that they're watching? Or maybe they don't know the guidelines are being reviewed?)
 
MeSci said:
(Not sure why people keep asking similar questions - to let the Govt. know that they're watching? Or maybe they don't know the guidelines are being reviewed?)
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Parliamentary Assistant not doing their job on researching the issue before putting the question down - waste of time for all concerned if it doesnt raise something new

Possibly just someone who has only recently been made aware firing off a question to show whichever constituents have lobbied them that they are doing something - a pity the research hadnt been done first
 
MeSci said:
Source: UK House of Commons

Date: July 4, 2018

URL:
https://www.parliament.uk/business/...s/written-question/Commons/2018-06-26/157851/

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

[Written Answers]

Chronic Fatigue Syndrome: Medical Treatments
--------------------------------------------

Thelma Walker

To ask the Secretary of State for Health and Social Care, whether his Department plans to review NICE guidelines on the treatment of myalgic encephalomyelitis; and if he will make a statement [157851].

Steve Brine

The National Institute for Health and Care Excellence (NICE) is an independent body and is responsible for determining whether its guidance should be updated to take into account new evidence. NICE is currently updating its clinical guideline on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis and is consulting stakeholders on a draft scope for the guideline update.

(Not sure why people keep asking similar questions - to let the Govt. know that they're watching? Or maybe they don't know the guidelines are being reviewed?)
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This is my dad's MP and although she couldn't attend the debates she has sent proper replies to his emails. I think it's an issue fairly new to her. It's always good to have another person on our side :thumbsup:
 
Source: UK House of Lords

Date: July 9, 2018

URL:
https://www.parliament.uk/business/...nts/written-question/Lords/2018-06-25/HL8931/

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

[Written Answers]

Fibromyalgia
------------

Lord Roberts of Llandudno

To ask Her Majesty's Government what steps they are taking to progress the diagnosis and treatment of fibromyalgia [HL8931].

Lord O'Shaughnessy

Diagnosing fibromyalgia can be difficult as there is no specific diagnostic test that can be used, and the symptoms can vary from person to person. Diagnosis is usually made by taking a medical history, checking symptoms and carrying out a physical examination. Blood tests, x-rays and other scans may be used to rule out medical conditions with similar symptoms to fibromyalgia.

The Royal College of General Practitioners (RCGP) curriculum includes training in musculoskeletal conditions, and as such, GP training can include fibromyalgia. A key component of a trainee GP's final assessment, alongside the Clinical Skills Assessment and Workplace Based Assessment, is the applied knowledge test (AKT). The AKT is a summative assessment of the knowledge base that underpins independent general practice in the United Kingdom within the context of the NHS. The content guide for the RCGP, which serves to prepare trainees for the test, includes a specific reference to a required knowledge of fibromyalgia. The Applied Knowledge Test Content Guide is attached.

A range of support exists to help GPs identify the signs and symptoms of
fibromyalgia in primary care. This includes an e-learning course developed by the RCGP and Arthritis Research UK on musculoskeletal care, including fibromyalgia, and a medical guide on diagnosis and treatment developed by the Fibromyalgia Association UK (FMUK) for health professionals. Information for the public can be found on the NHS Choices website and is also available in an online patient information guide produced by FMUK. The Fibromyalgia Guidance for Health Professionals is attached.

Although there is no cure for fibromyalgia, some treatments can ease symptoms and support improved quality of life for patients. The treatments offered will depend on the severity of a patient's condition, but may include: pharmacological pain relief; physiotherapy; dietary and exercise advice; counselling or cognitive behavioural therapy; and self-management programmes which aim to give patients the skills and confidence to manage their conditions more effectively. There are also a number of National Health Service trusts that offer specialist fibromyalgia clinics, such as the Royal National Hospital for Rheumatic Diseases in Bath, which patients can access on referral from the clinician responsible for their care.

Fibromyalgia Guidance for Health Professionals

http://qna.files.parliament.uk/qna-attachments/930931/original/Medical Pack.pdf

Applied Knowledge Test Content Guide

http://qna.files.parliament.uk/qna-attachments/930931/original/Content Guide August 2014.pdf
 
Medical Treatments: Side Effects:Written question - HL8829
https://www.parliament.uk/business/...nts/written-question/Lords/2018-06-20/HL8829/

Asked by The Countess of Mar

Q. Department of Health and Social Care
Medical Treatments: Side Effects
HL8829

To ask Her Majesty's Government, further to the Written Answer by Lord O'Shaughnessy on 19 June (HL8366), what means are available for reporting and recording adverse health events resulting from non-pharmacological treatments such as graded exercise therapy or cognitive behavioural therapy on a similar basis to those for reporting adverse events to pharmacological treatments through the Medicines and Healthcare Products Regulatory Agency's Yellow Card Scheme.

A. Answered by: Lord O'Shaughnessy

The Yellow Card Scheme includes a facility to report suspected adverse incidents associated with products used in psychological treatments. In addition, in guideline development, when reviewing the evidence relating to interventions, the National Institute for Health and Care Excellence’s guideline development committees will take into account any adverse outcomes that are reported, alongside the clinical and cost-effectiveness.

Patients are able to raise concerns about such treatments directly with a healthcare professional, by raising a concern with the healthcare provider or by making a complaint.

ME Research article on this, http://www.meresearch.org.uk/news/cbt-get-parliamentary-question/
The Yellow Card Scheme allows the Medicines & Healthcare products Regulatory Agency (MHRA) to monitor the safety of all healthcare products in the UK to ensure they are acceptably safe for patients and those that use them. Reports can be made for all medicines including vaccines, blood factors and immunoglobulins, herbal medicines and homeopathic remedies, and all medical devices available on the UK market. The term ‘medical device’ covers almost all products, except medicines, that are used in healthcare. They can be used for the diagnosis, prevention, monitoring or treatment of illness or disability. An adverse incident is an event that caused, or almost caused, an injury to a patient or other person or a wrong or delayed diagnosis and treatment of a patient.

GET and CBT does not appear to fit easily into the remit of the Yellow Card Scheme but nevertheless will allow a means by which adverse outcomes are recorded officially and the data capable of being drawn upon. ME Research UK has previously commented that there is a mismatch between the experiences of GET reported in patient surveys and the evidence from formal clinical trials. In surveys, between 39 and 57% of ME/CFS patients say that GET worsens their symptoms, while the scientific literature paints a picture of moderate benefit and rarely alludes to adverse effects. It is to be hoped that reports via the Yellow Card Scheme of adverse effects of GET/CBT will feed into the process of replacing the current NICE guideline and provide evidence of what many ME/CFS patients say is the reality of the efficacy of GET/CBT.
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ETA: I've created a new thread for discussion of this here, https://www.s4me.info/threads/uk-th...port-adverse-incidents-from-get-and-cbt.4951/
 
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