UK House of Lords/ House of Commons Questions

Moderator note - three threads on questions in the UK House of Lords and House of Commons have been merged at the request of the original posters

"The Countess of Mar Deputy Chairman of Committees, Deputy Speaker (Lords)
To ask Her Majesty's Government whether the Department of Health recognises Chronic Fatigue Syndrome which develops up to six months after vaccination with human papilloma virus vaccine as a symptom of an adverse reaction to the vaccine.

Lord O'Shaughnessy The Parliamentary Under-Secretary of State for Health
Chronic Fatigue Syndrome (CFS) is a condition that occurs naturally in the age group eligible for human papillomavirus (HPV) vaccine. The Medicines and Healthcare products Regulatory Agency has completed a United Kingdom epidemiological study which found no evidence to suggest that HPV vaccine may increase the risk of developing CFS. The results of this study were published in a peer-reviewed scientific journal in 2013.

This finding is further supported by the results of a recent population-based study in Norway, which similarly found no evidence of a causal association between HPV vaccine and CFS. Copies of HPV vaccination and risk of chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide register-based study from Norway and Bivalent human papillomavirus vaccine and the risk of fatigue syndromes in girls in the UK are attached."

Don't know what they mean by 'condition that occurs naturally"(?)
Anyone like to dig out these studies?

 

"The Countess of Mar Deputy Chairman of Committees, Deputy Speaker (Lords)
To ask Her Majesty's Government, further to the Written Answers of Lord O’Shaughnessy on 19 July 2017 (HL684 and HL685), and in the light of two recent studies on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) services, Specialist treatment of chronic fatigue syndrome/ME (Bristol University, July 2017), and Spotlight on specialist services; UK healthcare for people with ME (Action for ME July 2017), what assessment they have made of the findings that (1) fewer than half the commissioning bodies commission specialist services for people with ME/CFS, (2) fewer than a third of patients seen report improvements, and (3) there are no domiciliary or in-patient services for the severely ill and housebound; and whether they intend to conduct an examination of ME/CFS provision nationwide.

Lord O'Shaughnessy The Parliamentary Under-Secretary of State for Health
Clinical commissioning groups (CCG) are responsible for commissioning many healthcare services to meet the needs and requirements of their local population, including those for people with chronic fatigue syndrome/myalgic encephalomyelitis. In doing so, CCGs commission services that reflect the needs of local people and that support improvements in health and healthcare outcomes.

The National Institute for Health and Clinical Excellence (NICE) guidance set outs best practice for clinicians on the diagnosis, treatment care and support of people with myalgic encephalomyelitis and supports commissioners to to plan services for local populations.

On 20 September 2017, NICE announced plans to undertake a full review of the guidance.

A copy of the guidance is attached.

NICE guidance on CFS/ME (PDF Document, 919.08 KB)"

 

I'd assume he meant 'unrelated to the vaccine'. I've not looked at the studies myself, but saw a discussion of them which made them sound solid (I realise that's not a great way of making a judgement on these things).

 

http://www.parliament.uk/business/p...nts/written-question/Lords/2017-10-25/HL2530/

The Countess of Mar:

To ask Her Majesty's Government how many specialist services are available in England for the diagnosis and treatment of chronic fatigue syndrome/myalgic encephalomyelitis.

http://www.parliament.uk/business/p...s/written-question/Commons/2017-10-26/109997/

Patrick Grady:

To ask the Secretary of State for Health, if he will respond to Early Day Motion 271, entitled NICE guidelines on ME.

http://www.parliament.uk/business/p...s/written-question/Commons/2017-10-31/110590/

Julian Sturdy:

To ask the Secretary of State for Health, what steps the Government is taking to raise awareness of myalgic encephalomyelitis among (a) healthcare professionals and (b) the general public.

http://www.parliament.uk/business/p...s/written-question/Commons/2017-10-31/110595/

Julian Sturdy:

To ask the Secretary of State for Health, what plans his Department has to mark International Awareness Day for Chronic Immunological and Neurological Diseases on 12 May 2018.

http://www.parliament.uk/business/p...nts/written-question/Lords/2017-11-02/HL2860/

The Countess of Mar:

To ask Her Majesty's Government whether patients with myalgic encephalomyelitis or chronic fatigue syndrome are offered the choice of taking part in a telephone or Skype consultation when they are too ill to travel; whether this policy applies to all hospitals; and if not, why not.

 

Answer to first question:
http://www.parliament.uk/business/p...nts/written-question/Lords/2017-10-25/HL2530/

The Countess of Mar

To ask Her Majesty's Government how many specialist services are
available in England for the diagnosis and treatment of chronic fatigue
syndrome/myalgic encephalomyelitis. [HL2530]

Lord O'Shaughnessy

This data is not available.

Clinical commissioning groups (CCGs) are responsible for commissioning
many healthcare services to meet the needs and requirements of their
local population including those for people with chronic fatigue
syndrome/myalgic encephalomyelitis (CFS/ME). In doing so, CCGs
commission services that reflect the needs of local people and that
support improvements in health and healthcare outcomes.

The National Institute for Health and Care Excellence (NICE) guidance
advises that any decision to refer a person to specialist CFS/ME care
should be based on their needs, the type, duration, complexity and
severity of their symptoms, and the presence of comorbidities. The
decision should be made jointly by the person with CFS/ME and the
healthcare professional. Referral to a specialist should be offered
within six months of presentation to people with mild CFS/ME, within
three to four months of presentation to people with moderate CFS/ME
symptoms and immediately to people with severe CFS/ME symptoms.

 

Sorry if this is OT, but that's absurd.

So no one knows how many services are available? This is a publicly funded organisation, presumably with computers and databases, maybe even with people who can look at a piece of paper and count.

If, genuinely, no one knows, then questions should be asked as to why, and how many other things don't they know, big things, like do they know how many specialist services are available for diagnosis and treatment of cancer.

If they don't see this as a problem, which clearly they don't, then heads should oll, metaphorically of course.

 

The one favourable thing that can be said about that response from the noble Lord is that whoever drafted it appears to recognise its total inadequacy.

 

One problem is that there are so few effective "specialists" in the UK. I understand that Dr Bansal will be retiring next year, at least from NHS

 

Julian Sturdy Conservative, York Outer
To ask the Secretary of State for Health, what steps the Government is taking to raise awareness of myalgic encephalomyelitis among (a) healthcare professionals and (b) the general public.

Steve Brine The Parliamentary Under-Secretary of State for Health
There is information readily available on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) for both healthcare professionals and the general public via NHS Choices website. Further information is also provided in the National Institute for Health and Care Excellence (NICE) clinical guidance which can be found via their website. This information 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:

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

www.nice.org.uk/guidance/cg53

On 20 September 2017, NICE announced plans to undertake a full review of the guidance to ensure it reflects the latest available evidence.

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 general practitioner’s qualifying exams.

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.



Completely missing the point that the information supplied to the public, and Medical professionals is totally inaccurate at best.

 

Buck passing as usual

But - ME as an issue is becoming more noticeable.. I'm grateful to all those who ask the questions.

 

Answer to penultimate question:

http://www.parliament.uk/business/p...s/written-question/Commons/2017-10-31/110595/
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster

[Written Answers]

Chronic Fatigue Syndrome: Health Education
------------------------------------------

Julian Sturdy

To ask the Secretary of State for Health, what plans his Department has
to mark International Awareness Day for Chronic Immunological and
Neurological Diseases on 12 May 2018. [110595]

Steve Brine

There are no specific plans at this point.

NHS England's Long Term Conditions Unit works with partners such as
voluntary sector organisations (including those with a remit on chronic
disease) to synchronise communications activity in line with many annual
awareness days. The NHS England media team may also provide support
through social media to maximise the reach of established campaigns.

 

To be fair, given the current state of UK medical 'education' on the topic, I think I'd prefer to keep awareness pretty low... let us hide in the shadows!

 

I think that AfME are trying to find this out, but until GET and Directed CBT are DROPPED (preferably from a great height) from the NICE guidelines and the clinics, the only benefit is probably meeting other people with ME and maybe help with disability claims etc.

 

Answer to Question HL2860

The Countess of Mar

To ask Her Majesty's Government whether patients with myalgic
encephalomyelitis or chronic fatigue syndrome are offered the choice of
taking part in a telephone or Skype consultation when they are too ill
to travel; whether this policy applies to all hospitals; and if not, why
not. [HL2860]

Lord O'Shaughnessy

The commissioning of services for patients with chronic fatigue
syndrome/myalgic encephalomyelitis (CFS/ME) is a local matter. The
current National Institute for Health and Care Excellence (NICE)
guidance on CFS/ME advises that healthcare professionals should provide
diagnostic and therapeutic options to patients that reflect their needs
and preferences. This may include providing services in a patient's home
or using telephone or email to contact. Such approaches may also include
Skype consultations where available and appropriate.

On 20 September 2017, NICE announced plans to undertake a full review of
the guidance.

 

A good question, and it's not just relevant to pwME. Access to the health system in the UK just isn't designed for sick people

 

Agreed

 

http://www.parliament.uk/business/p...nts/written-question/Lords/2017-11-06/HL2945/
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, in the light of the BMJ best practice
guidance on chronic fatigue syndrome published in July, whether there
are any National Health Service tests available for autoimmune and
metabolic dysfunction. [HL2945]

Lord O'Shaughnessy

Clinical commissioning groups (CCGs) are responsible for commissioning
many healthcare services to meet the needs and requirements of their
local population, including those for people with myalgic
encephalomyelitis/chronic fatigue syndrome (ME/CFS). In doing so, CCGs
will commission services that reflect the needs of local people and that
support improvements in health and healthcare outcomes.

The current National Institute for Health and Care Excellence (NICE)
guidance on ME/CFS does not recommend routine autoimmune or metabolic
testing but advises that diagnosis should be made after all other
possible diagnoses have been excluded. Shared decision making should
take place during diagnosis and all phases of care between the person
with ME/CFS and healthcare professionals.

On 20 September 2017, NICE announced plans to undertake a full review of
the guidance.

--------
(c) 2017 Parliamentary copyright

 

http://www.parliament.uk/business/p...nts/written-question/Lords/2017-11-22/HL3499/

The Countess of Mar

To ask Her Majesty's Government when the Chronic Fatigue Syndrome/Myalgic Encephalomyelitis National Outcomes Database ceased to exist; and why the data included in that database is no longer
collected.

http://www.parliament.uk/business/p...nts/written-question/Lords/2017-11-22/HL3501/

The Countess of Mar

To ask Her Majesty's Government whether parental consent was obtained by school attendance officers before parents were sent letters by researchers for the study entitled Unidentified Chronic Fatigue
Syndrome/myalgic encephalomyelitis is a major cause of school absence: surveillance outcomes from school-based clinics, published by the British Medical Journal in 2011.

 

I had no idea that a 'Chronic Fatigue Syndrome/Myalgic Encephalomyelitis National Outcomes Database' existed.

Does anyone know when it started and when it stopped?