UK House of Lords/ House of Commons Questions

This is a thread well worth pulling. At least if and once the NICE guidelines survive. For years we were told to shut up because there was research being funded, somewhere out there, probably. It's all low quality, which we have said and was obvious but people ignored it. But now (if) it's official, they will have pushed garbage quality research for decades despite being made fully aware of it and made decisions affecting millions without a valid basis, no different than making policy based on horoscopes.

This would be the only response moving forward whenever the standard reply comes in: your research is all garbage, it's official. It probably wouldn't change anything right away but it will be the record for later, especially in establishing that there was clear and blatant awareness of this problem and they simply ignored it.

 

There are probably folks here who were involved in the lobbying surrounding the UK (Westminster) Parliamentary debate on ME [Thursday 24 January 2019- official record "Hansard"*] - I'm sure there are fine words in there - no mention of funding flawed research and then defending it i.e. even after NICE have highlighted the issue. But here we are with the Secretary of State [Minister] for Health and Social Care defending "low and very low quality" research funded by his Department - so much for the fine words then.

Must have a look at Hansard to see the fine words*.

*https://hansard.parliament.uk/commo...4BFD-A2C0-A58B57F41D4D/AppropriateMETreatment

@MSEsperanza @Michiel Tack

 

I decided to email* the MPs [who are still in Parliament] and who participated in the debate on CFS**. I may have overstepped the mark re "levelling up" ---- I also copied to the secretary of states [Ministers] who fund the "problematic" research and the public accounts committee who scrutinise how Departments spend public money.

I expect a lot of MPs will not assist as I'm not in their constituency - even though the issues raised relate to Departments/Ministers not addressing issues raised in Parliament.


*"My [family member] -----

You participated in the Parliamentary debate on "Appropriate ME Treatment" - Thursday 24 January 2019. During the debate there were numerous criticisms of the Government funded [£5 million], 2005 to 2010, PACE trial which set out to assess whether ME/CFS could be treated using CBT or exercise therapy.

In November 2020 NICE published - "Evidence reviews for the nonpharmacological management of ME/CFS" which found that "the evidence [PACE and other studies] was of low and very low quality" generally this was, as in the case of PACE, due to "lack of blinding in the studies --combined with the mostly subjective outcomes".
[https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-7 - See page 317]

So, as highlighted in the Parliamentary debate, PACE etc. were "low and very low quality" i.e. could not be used as a basis to assess treatment options. Interestingly, PACE was originally intended to include objective outcome indicators i.e. actigraphy - small wearable devices used to measure activity levels "But they never published that data and that data undoubtedly said that the interventions were no good, no use." [Note]. By using questionnaires the PACE study authors were able to claim that CBT and exercise therapy were effective in treating ME/CFS - basically using the strategy Sir Humphrey famously illustrated i.e. manipulating your audience to get the "right" answer - using questionnaires.

Last month Claire Hanna asked a Parliamentary Question [UIN 24368] - 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."
The weasel words from the SOS were "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 truth of course is that, despite the criticism expressed in the Parliamentary debate and the damning criticism by NICE, the same "low and very low quality" studies are being funded by Department of Health (via NIHR) and doubtless, the Department for Business, Energy and Industrial Strategy (via UKRI). I.e. studies evaluated using questionnaires not objective activity monitoring (actigraphy).

As Parliamentarians, how do you propose to address the issue that these Departments continue to fund "low and very low quality" studies in ME/CFS, and Long covid, despite Parliament's criticism?
In the Parliamentary debate it was stated that "90% of [ME/CFS] sufferers were working before they were diagnosed. That figure drops to 35% afterwards". There are an estimated 200,000 people with ME/CFS in the UK, people who are deprived of the right to attend school, university, work ----. Are these people less important than the researchers who received £millions for "low and very low quality" studies?

10,000s of people with Long covid now face the same experience as people with ME/CFS. The same Government buddy researchers, who delivered Government funded "low and very low quality" research in ME/CFS, are now being funded to carry out "low and very low quality" research in Long covid - I suppose you could call that "levelling up".

Will the Government not address Parliaments concerns and ensure that the research they fund uses objective outcome indicators (actigraphy)?


Thank you in advance for your assistance,
Xxxxx

Note - "But they never published that [actigraphy] data and that data undoubtedly said that the [CBT & GET] interventions were no good, no use." [Professor of Psychology, Brian Hughes - ]"


**pubaccom@parliament.uk
carol.monaghan.mp@parliament.uk
robert.goodwill.mp@parliament.uk
matthew.offord.mp@parliament.uk
amessd@parliament.uk
nicky.morgan.mp@parliament.uk
emma.lewell-buck.mp@parliament.uk
kevin.foster.mp@parliament.uk
ben.lake.mp@parliament.uk
liz.twist.mp@parliament.uk
nick.thomassymonds.mp@parliament.uk
patricia.gibson.mp@parliament.uk
darren.jones.mp@parliament.uk
mohammad.yasin.mp@parliament.uk
jim.shannon.mp@parliament.uk

 

Hi just had an email from Darren Jones [MP for Bristol North West] "Please can I ask you to supply your full address and postcode? There is strict Parliamentary Protocol that dictates MPs can only log and progress case work requests on behalf of constituents. I will therefore need this information to open a case file for you." I've had a number of replies along those lines.
One option would be to "find" someone, with ME, who lives in the constituency and who is willing to ask the MP to progress this - anyone from Bristol North West or indeed any MP listed below*.
I'm a little disappointed since I highlighted that:

• they (MP*) had spoken in the Parliamentary debate on ME/CFS, highlighting their concerns about the flawed PACE study etc.; and
• NICE has recently found PACE etc. to be "low or very low" quality studies; and
• the Government continues to fund "low or very low" quality studies - contrary to the views these MPs expressed in the debate.

I can't see why you need to be a constituent to be able to tell an MP that Ministers continue to ignore views expressed by them, and indeed MPs from all parties, in the Parliamentary debate!

Suggestions welcome.

*pubaccom@parliament.uk
carol.monaghan.mp@parliament.uk
robert.goodwill.mp@parliament.uk
matthew.offord.mp@parliament.uk
amessd@parliament.uk
nicky.morgan.mp@parliament.uk
emma.lewell-buck.mp@parliament.uk
kevin.foster.mp@parliament.uk
ben.lake.mp@parliament.uk
liz.twist.mp@parliament.uk
nick.thomassymonds.mp@parliament.uk
patricia.gibson.mp@parliament.uk
darren.jones.mp@parliament.uk
mohammad.yasin.mp@parliament.uk
jim.shannon.mp@parliament.uk

 

This seems to make lobbying more difficult e.g. you'd need to have someone in these constituencies who is prepared to make a complaint to their MP - a proxy if you like. Any suggestions on how to identify someone who'd be prepared to make a complaint in these constituencies? I could try ME Action, since they were/are active in the UK (think I picked up that the Scottish group are active) - anyone got a contact on this forum or elsewhere? Other suggestions welcome. Could try Action for ME but past experience is a barrier to doing that!

Frustrating - I guess that's one of the reasons people don't lobby MPs. Unkind thought i.e. it might be a relief to MPs - they don't have to do X --- bit like Nelson "I see no ships"!

 

Interesting I had vaguely wondered if the APPG for ME had been resurrected - has it?

The last APPG for ME seemed to have a pretty torrid time - PACE, Action for ME acting as secretariat ----

EDIT - found the APPG for "Myalgic Encephalomyelitis (ME)" here [https://publications.parliament.uk/pa/cm/cmallparty/210714/myalgic-encephalomyelitis-me.htm]
There doesn't seem to be a APPG for Lyme or Long covid - if an APPG is formed for either of these then it might be a useful further contact in the future.

Question - can MPs on APPG raise issues raised by those who are not their constituents?

 

Contacted UK ME Action [https://www.meaction.net/countries/uk/].

Hi, ----
I recently emailed MPs, who'd participated in the Parliamentary debate on CFS in 2019, re the response to a Parliamentary Question* which 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."
However NICE recently reviewed studies [including PACE] and found that they were "--low and very low quality--"** typically due to the fact that the studies were unblinded and used subjective outcome criteria (questionnaires). So the Government hasn't addressed NICE's concerns re the low/very low quality studies funded by NIHR [I don't know much about UKRI].
I'd asked the MPs, who participated in the Parliamentary debate, to raise the issue but the usual response was "do you live in my constituency"? So I thought you guys might have contacts in these constituencies i.e. who could contact the MP or contacts on the All Party Parliamentary Group - if they can raise queries which are not from constituents.
I can send the email if that would help - if you provide an email address and I can email the Scottish Team as there email address is available online.


*https://questions-statements.parliament.uk/written-questions/detail/2021-06-29/24368/
**https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-7 - See page 317

 

Decided to try emailing the members of the APPG for "Myalgic Encephalomyelitis (ME)" i.e. to see if they'd try to challenge the Ministers who fund NIHR and UKRI.

"Hi,
I'm emailing you as you sit on the APPG for "Myalgic Encephalomyelitis (ME)". Basically, the issue of the "low, and very low" quality of research into ME/CFS, much of it funded by the Government via NIHR, has been highlighted in the recent NICE review. Despite the damning findings by NICE it appears, from the response to this AQW, that no action has been taken to address the issue nor is any planned (Claire Hanna MP to - Secretary of State for Health and Social Care - AQW "UIN 24368"]).

See email below.

Thank you in advance for your assistance,
Xxx"

carol.monaghan.mp@parliament.uk
scottrc@parliament.uk
stephen.metcalfe.mp@parliament.uk
sharon.hodgson.mp@parliament.uk
jason.mccartney.mp@parliament.uk
james.davies.mp@parliament.uk
abrahamsd@parliament.uk
fleur.anderson.mp@parliament.uk

 

Got a response to my request to MPs, who participated in the debate on CFS in 2019, to challenge the Governments continued support for "low and very low" quality research:
"I am just mulling how to frame a question which gets a better answer*. It is scandalous to waste public money on poor quality research, and such a disservice to people with ME who deserve so much better. Leave it with me for a few days
Ros

Ros Scott
Baroness Scott of Needham Market"

So if anyone has an idea re the drafting of a Parliamentary Question then feel free to suggest it.

@Caroline Struthers

*Here's the original question and answer:
Question for Department of Health and Social Care
Chronic Illnesses: Research
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.
"

 

Just some thoughts ...

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 designed without any presumption, implicit or otherwise, that simply because the symptoms are as yet medically unexplained, there must instead be a psychological basis for those symptoms or for perpetuation of those symptoms.
• The study protocols are properly peer reviewed by truly independent scientists, and that all and any revisions are similarly peer reviewed.
• A condition of funding that trial databases be properly designed up-front to facilitate easy release of anonymised trial data, without any need for trial-specific expertise. e.g. One database holds participant-identifying data that it correlates with anonymous participant IDs. All the remaining trial data in a separate database that only references participants by their anonymous IDs; this database could be released to the wider community as-is.
• A condition of funding be that the complete anonymized databases be made available to the wider community, and within a given time limit after the first publication of the trial's findings.

 

Once the guidelines are out, if they are in line with the draft:

To ask the Secretary of State for Health and Social Care, now that NICE has concluded that research previously funded by the Government into ME/CFS is of "low" or "very low" quality because of the use of subjective outcome criteria, what steps will be taken to ensure that government-funded current and future research projects into ME/CFS and other post-viral syndromes, including Long Covid, use objective outcome criteria?

 

Nicky Morgan is now in the Lords https://www.gov.uk/government/people/nicky-morgan

 

@Gecko any ideas on who @FMMM1 could contact? via MEAction UK?

 

Janet Daby Labour, Lewisham East
To ask the Secretary of State for Health and Social Care, whether he has made a recent assessment of the potential merits of increasing funding for research into ME and Chronic Fatigue Syndrome.

Edward Argar Minister of State (Department of Health and Social Care)
The Government invests in health research through the National Institute for Health Research (NIHR) and the Medical Research Council (MRC), through UK Research and Innovation. The NIHR and MRC both welcome high-quality applications for research into all aspects of myalgic encephalomyelitis (ME), otherwise known as chronic fatigue syndrome (CFS). No assessment has been made of the merits of increasing funding for research into ME/CFS. While it is not usual practice for the NIHR and MRC to ring-fence funds for particular topics or conditions, the MRC has had a cross-board highlight notice on CFS/ME open since 2003.

 

Long covid does have an APPG chaired by libdem Layla Moran. edit:She is MP for Oxford West and Abingdon.

The last time I looked there was no libdem MP in the ME APPG. I think they have difficulty covering all briefs with just 11MPs.

 

I think we should challenge the recent NICE decision to stick with using Cochrane*. I was thinking of writing to the APPGs on ME/CFS (title?) and Coronavirus (title?). If the NICE review re CFS guidelines found the available studies to be "low and very low quality" and Cochrane found them to be "moderate" then how can the continued use of Cochrane reviews, in the preparation of guidelines for ME/CFS or Long covid, be justified?

Also, another way to challenge this is to ask the Secretary of State [Minister] for Health and Social Care [Department which funds NICE] a parliamentary question - anyone got an MP who'd ask one?

*https://www.s4me.info/threads/nice-...-guideline-recommendations.22209/#post-370570
@Caroline Struthers

 

UIN 45937, tabled on 9 September 2021

Fleur Anderson
Labour
Putney
Commons


To ask the Secretary of State for Health and Social Care, if he will ensure that NICE publishes the ME/CFS Guidelines in their current form to help prevent harm from Graded Exercise Therapy.

Due for answer in 5 days (by 14 September 2021)