UK House of Lords/ House of Commons Questions

Dolphin said:
From: Dr. Marc-Alexander Fluks <fluks@combidom.com>


Source: UK House of Lords
Date: April 27, 2021
URL:
https://questions-statements.parliament.uk/written-questions/detail/2021-04-13/hl14895
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster


[Written Answers]

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

Baroness Scott of Needham Market

To ask Her Majesty's Government why the Department for Work and Pensions
classifies ME/CFS as a musculoskeletal disease for the purposes of
statistics and for the guidance and training of their health
professionals, rather than as a neurological disease.


Baroness Stedman-Scott

Assessment of entitlement to benefit does not depend on the condition
itself, the underlying cause or how the condition is classified, but on
the disabling effects of the condition(s) present.

The condition insight reports for Personal Independence Payment Health
Professionals state that ME/CFS is classified as a neurological
disorder; the guidance for CHDA Health Professionals who conduct Work
Capability Assessments make no reference to the classification of
ME/CFS.

The issue of classification for coding and statistical purposes has
recently been brought to our attention. In light of this we are
currently exploring moving ME/CFS from the musculoskeletal to
neurological section for coding purposes.

--------
(c) 2021 UK Parliament
Click to expand...
Wow. Also: wow. Two entirely different types of wow.

This sure beats Cochrane's absolute garbage answer that their classification doesn't mean anything, which actually manages to be a less credible answer than their "dog ate homework" answer to publishing small corrections on their own content.
 
From: Dr. Marc-Alexander Fluks


Source: UK House of Commons
Date: May 17, 2021
URL:
https://questions-statements.parliament.uk/written-questions/detail/2021-05-11/346
Ref: http://www.me-net.combidom.com/meweb/web1.4.htm#westminster


[Written Answers]

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

Rachael Maskell

To ask the Secretary of State for Health and Social Care, whether his
Department has commissioned research into the lightning process for
people who have myalgic encephalomyelitis (ME) or chronic fatigue
syndrome (CFS).


Edward Argar

The Department funds research through the National Institute for Health
Research (NIHR). The NIHR has not funded specific research into the
lightening process for people with myalgic encephalomyelitis or chronic
fatigue syndrome.

--------
(c) 2021 UK Parliament
 
Emma Hardy Shadow Minister (Education)
To ask the Secretary of State for Health and Social Care, what steps his Department are taking to improve the process of diagnosis for people with myalgic encephalomyelitis.

Helen Whately Minister of State (Department of Health and Social Care)
On 20 September 2017, the National Institute for Health and Care Excellence announced its decision to undertake a full update of their myalgic encephalomyelitis guideline following a review of the latest available evidence on the diagnosis and management of the condition and a public consultation. This will set the direction on best practice in this area and is due for publication in August 2021.
 
Sly Saint said:
Emma Hardy Shadow Minister (Education)
To ask the Secretary of State for Health and Social Care, what steps his Department are taking to improve the process of diagnosis for people with myalgic encephalomyelitis.

Helen Whately Minister of State (Department of Health and Social Care)
On 20 September 2017, the National Institute for Health and Care Excellence announced its decision to undertake a full update of their myalgic encephalomyelitis guideline following a review of the latest available evidence on the diagnosis and management of the condition and a public consultation. This will set the direction on best practice in this area and is due for publication in August 2021.
Click to expand...
That it takes 4 years for such a process, which was initially rejected and had to be reopened following too many complaints, looks very incompetent and unprofessional. This is not something to boast about, it's something to be deeply ashamed of.

But keep those questions coming, they will feature heavily in assigning blame for this disaster.
 
Rachael Maskell Shadow Minister (Digital, Culture, Media and Sport)
To ask the Secretary of State for Health and Social Care, what training is provided (a) in medical schools, (b) for GPs and (c) for hospital doctors on (a) ME and (b) similar conditions.

Helen Whately Minister of State (Department of Health and Social Care)
Each individual medical school in the England sets its own undergraduate curriculum which must meet the standards set by the General Medical Council (GMC), as the regulator of the medical profession. The GMC would expect that, in fulfilling these standards, newly qualified doctors are able to identify and treat or manage any care needs a person has, including relating to chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and other similar conditions.


@EducateME
 
Ah well if they "would expect" then it's all good then, no need for anyone to do anything, this clearly takes care of itself.

They are objectively not capable, though. But it's not as if any of this actually matters.
 
Claire Hanna Social Democratic and Labour Party, Belfast South
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that clinical studies for (a) ME, chronic fatigue syndrome and (b) long-covid are conducted using appropriate outcome criteria.

Edward Argar Minister of State (Department of Health and Social Care)
The National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) have invested in research into myalgic encephalomyelitis, chronic fatigue syndrome and ‘long’ COVID-19. All research commissioned by the NIHR and UKRI is subject to robust peer review processes to ensure that all the studies funded use appropriate outcome criteria to assess and measure their impact.

eta:
"All research commissioned by the NIHR and UKRI is subject to robust peer review processes to ensure that all the studies funded use appropriate outcome criteria to assess and measure their impact."
:laugh:
 
Merged thread
Here's the question* my MP Claire Hanna asked and the response:

*"To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that clinical studies for (a) ME, chronic fatigue syndrome and (b) long-covid are conducted using appropriate outcome criteria."

Asked 29 June 2021

**"The National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) have invested in research into myalgic encephalomyelitis, chronic fatigue syndrome and ‘long’ COVID-19. All research commissioned by the NIHR and UKRI is subject to robust peer review processes to ensure that all the studies funded use appropriate outcome criteria to assess and measure their impact."

I've gone back to Claire to suggest a further question:
"Hi Siobhán [Claire's assistant],
Firstly thank you very much for asking this question. The studies referred to [including the controversial PACE trial] have been found by the recent NICE review, of their guidance on ME/CFS, to be "low quality" i.e. since they were typically unblinded (or lacked adequate blinding) and used subjective outcome indicators - questionnaires rather than e.g. activity monitoring. So the Secretary of State for Health and Social Care considers these are "appropriate outcome criteria*" and NICE consider them to be "low quality"!

This is a much broader issue e.g. the Government funded "research" into Long covid is being carried out by the same researchers who were funded to carry out the "low quality" studies re ME/CFS - using the same flawed methodology. So nothing appears to have changed i.e. no lessons have been learned from the NICE review re ME/CFS.

Perhaps we could ask a follow up question highlighting an apparent inconsistency?

Regards"

Perhaps we could "pester" officials with questions like this - anyone got contacts in the Long covid community?

@Andy @Trish
 
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FMMM1 said:
I've gone back to Claire to suggest a further question:
"Hi Siobhán [Claire's assistant],
Firstly thank you very much for asking this question. The studies referred to [including the controversial PACE trial] have been found by the recent NICE review, of their guidance on ME/CFS, to be "low quality" i.e. since they were typically unblinded (or lacked adequate blinding) and used subjective outcome indicators
Click to expand...

They are really relying on peer review to say that quality is achieved. One issue here is that peer review goes to such a small group of people who all produce poor quality research and don't recognize the issues; or have an interest in not challenging the same poor methodology that they use. So maybe the answer is to call for a peer review from a wider community or set minimum standards.
 
When you consider the definition of "peer"-

Peer definition is - one that is of equal standing with another : equal; especially : one belonging to the same societal group especially based on age, grade, or status-

it is hardly surprising that, in this field, peer review would be inadequate.
 
Adrian said:
They are really relying on peer review to say that quality is achieved. One issue here is that peer review goes to such a small group of people who all produce poor quality research and don't recognize the issues; or have an interest in not challenging the same poor methodology that they use. So maybe the answer is to call for a peer review from a wider community or set minimum standards.
Click to expand...

Yea frankly cheeky to say "peer reviewed" - "low quality" is what NICE considered it to be
So what they should be saying --- acknowledge NICE findings ---- steps are being taken ---

So maybe the next question would be along those lines - does secretary of state accept NICE findings that research funded by his Department re ME/CFS is low quality and what steps (such as using objective evaluation criteria) are being taken to address those short comings?

Would help if we could get Long covid folks on board --- public opinion (AKA "votes"), they might care about that!

EDIT - need a reference/citation re NICE finding research "low quality" @Michiel Tack ?
 
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@Trish you seem to keep up with the NICE Guidance review - do you have a source for the statement that NICE considered PACE etc. to be "low quality" evidence i.e. due to these studies being unblinded/inadequate blinding and using subjective outcome indicators?

On the plus side @Snow Leopard highlighted* that this study**, published in 2020, which used actigraphy - objective outcome indicator. Fluge & Mella used it in the Rituximab trial so there are examples of objective outcome criteria being used - it's not impossible; just the majority of the UK Government funded psychological studies persist in using subjective outcome indicators (questionnaires).

EDIT - see @Snow Leopard post below - the proposed study plans to use actigraphy - promising to be good in the future!

*https://www.s4me.info/threads/nih-p...-ketamine-on-fatigue-study.21510/#post-357835
https://journals.sagepub.com/doi/abs/10.1177/1352458520936226
 
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FMMM1 said:
@Trish you seem to keep up with the NICE Guidance review - do you have a source for the statement that NICE considered PACE etc. to be "low quality" evidence i.e. due to these studies being unblinded/inadequate blinding and using subjective outcome indicators?
Click to expand...
Evidence Review G
https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-7
page 317
(the numbers in the text are line numbers):
The majority of the evidence was of low and very low quality. The main reasons for
24 downgrading were risk of bias, indirectness and imprecision. There was a lack of blinding in
25 the studies due to the nature of the interventions. This, combined with the mostly subjective
26 outcomes, resulted in a high risk of performance bias. The committee considered this an
27 important limitation when interpreting the evidence.
Click to expand...
There's a lot more detail in the review G document.
 
FMMM1 said:
On the plus side @Snow Leopard highlighted* that this study**, published in 2020, which used actigraphy - objective outcome indicator. Fluge & Mella used it in the Rituximab trial so there are examples of objective outcome criteria being used - it's not impossible; just the majority of the UK Government funded psychological studies persist in using subjective outcome indicators (questionnaires).

*https://www.s4me.info/threads/nih-p...-ketamine-on-fatigue-study.21510/#post-357835
https://journals.sagepub.com/doi/abs/10.1177/1352458520936226
Click to expand...

The MS pilot trial of Ketamine for "fatigue" didn't use actigraphy, but the proposed study which is supposed to include ME/CFS patients is planning on using actigraphy.
 
Trish said:
Evidence Review G
https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-7
page 317
(the numbers in the text are line numbers):

There's a lot more detail in the review G document.
Click to expand...

Thanks @Trish

Need to make the effort to look at this.

EDIT - yes, page 317 has a neat summary of the problems:
"The majority of the evidence was of low and very low quality. The main reasons for
24 downgrading were risk of bias, indirectness and imprecision. There was a lack of blinding in
25 the studies due to the nature of the interventions. This, combined with the mostly subjective
26 outcomes, resulted in a high risk of performance bias. The committee considered this an
27 important limitation when interpreting the evidence."

So maybe a question highlighting Claire's previous question and asking whether the Minister still holds these views and whether he will raise the issue of NICEs comments with NIHR?
 
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Hi I've just emailed my MP* [Claire Hanna - Siobhán is her assistant]. If I can't get Claire to ask this question then can anyone else think of an MP who might help?

"Claire/Siobhán,
I should have provided this in my reply yesterday*

So maybe a question highlighting your (Claire's) previous question and asking
"whether, in light of NICE's recent assessment that the evidence provided by previous studies was "low and very low quality", typically due to "lack of blinding" and "subjective outcomes", the Minister proposes to take steps to ensure his Department does not continue to fund "low and very low quality" studies? E.g. by ensuring studies include objective outcome measurements such as activity monitoring [actimetry]."
Regards and happy to discuss
Francis

*[NICE's] Evidence reviews for the nonpharmacological management of ME/CFS
page 317 has a neat summary of the problems:
"The majority of the evidence was of low and very low quality. The main reasons for
24 downgrading were risk of bias, indirectness and imprecision. There was a lack of blinding in
25 the studies due to the nature of the interventions. This, combined with the mostly subjective
26 outcomes, resulted in a high risk of performance bias. The committee considered this an
27 important limitation when interpreting the evidence."
[https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-7]

EDIT - Minister's response referred to
"National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) have invested in research into myalgic encephalomyelitis, chronic fatigue syndrome"
Does anyone know if studies funded by these organisations were reviewed by NICE? Thanks
 
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I've noticed that these MPs recently asked Parliamentary Question on ME/CFS so I've emailed them to see if they'd ask a further question.
[Claire Hanna, Rachael Maskell, Emma Hardy, Caroline Lucas].


"Hi,
[family member] has disabling fatigue, so I do some lobbying re ME/CFS.

Claire, asked a Parliamentary Question* re "what steps he [Secretary of State for Health and Social Care] is taking to ensure that clinical studies for (a) ME, chronic fatigue syndrome and (b) long-covid are conducted using appropriate outcome criteria".
[UIN 24368, tabled on 29 June 2021]

The Answer** stated that "All research commissioned by the NIHR*** and UKRI**** is subject to robust peer review processes to ensure that all the studies funded use appropriate outcome criteria to assess and measure their impact."

The recent NICE review "Evidence reviews for the nonpharmacological management of ME/CFS" found that the "majority of the evidence was of low and very low quality" [page 317 - https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-7]. Typically this is due to the fact that the studies are unblinded, and use subjective outcome indicators [questionnaires] i.e. rather than objective outcome indicators [activity monitoring - "Fitbit" type devices] Basically, as illustrated by Sir Humprey in Yes Minister, questionnaires are not reliable outcome indicators [].

The researchers, who carried out the Government funded "low and very low quality" studies in ME/CFS, are now being funded to carry out research into Long covid - using the same flawed methodology.

I'm interested in whether any of you would ask a further Parliamentary Question on the apparent inconsistency between the NICE assessment of the quality of these studies and the SOS views, and whether SOS will take steps to ensure that "low and very low quality" research is not funded by his Department? Obviously I'd need to do some more work/research but I'm interested in whether anyone is prepared to raise this?

Thanks in advance,
---


*Question:
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that clinical studies for (a) ME, chronic fatigue syndrome and (b) long-covid are conducted using appropriate outcome criteria.

**Answer
The National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) have invested in research into myalgic encephalomyelitis, chronic fatigue syndrome and ‘long’ COVID-19. All research commissioned by the NIHR and UKRI is subject to robust peer review processes to ensure that all the studies funded use appropriate outcome criteria to assess and measure their impact.
[https://questions-statements.parliament.uk/written-questions/detail/2021-06-29/24368]
***National Institute for Health Research (NIHR) is funded through the Department of Health

****UK Research and Innovation (UKRI) is a non-departmental public body of the Government of the United Kingdom that directs research and innovation funding, funded through the science budget of the Department for Business, Energy and Industrial Strategy.
 
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