UK House of Lords/ House of Commons Questions

Chances are is that he has asked this question due to contact he has had with a constituent who either has, or cares for, someone with ME, so to me he seems to be up to his job of representing his constituents.
 
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Sly Saint said:
Vicky Foxcroft Shadow Minister (Work and Pensions)
To ask the Secretary of State for Health and Social Care, if her Department will take steps to collect data on the number of cases of myalgic encephalomyelitis that have been triggered by a Covid-19 infection.

Will Quince Minister of State (Department of Health and Social Care)
The Department does not intend to collect this data.
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Vicky Foxcroft Shadow Minister (Work and Pensions)
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 18 October 2022 to Question 59159 on Long Covid: Chronic Fatigue Syndrome, for what reason her Department decided not to collect this information.

Neil O'Brien The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
The long-term effects of COVID-19 and myalgic encephalomyelitis are separate conditions as defined by the National Institute for Health and Care Excellence.
 
The unspoken amplification of those replies is "ner na ner ner ner na" - One day we might have people in Government who see giving an answer to Parliament as an opportunity to inform and engage the electorate, as opposed to tediously snubbing the questioners. :bored:
 
Sly Saint said:
have you never watched 'Prime Ministers questions' in parliament, or 'Question time' on the telly........
other real debates are often called Q and A 's but not when politicians are involved.
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Same in the Netherlands btw, nothing of note ever gets discussed regardless of party affiliation. Does my head in really, but it is what it is.
 
Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health)
To ask the Secretary of State for Health and Social Care, what steps she is taking to raise awareness of myalgic encephalomyelitis amongst GPs and other doctors.

Helen Whately Minister of State (Department of Health and Social Care)
General Practitioners and other doctors are responsible for ensuring their clinical knowledge remains up-to-date as part of their continuing professional development.

The National Institute for Health and Care Excellence (NICE) published an updated guideline on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in October 2021, to improve awareness and understanding about ME/CFS. This guideline includes recommendations on diagnosis and management. NICE promotes its guidance via its website, newsletters and other media.
 
Sly Saint said:
Jim Shannon Shadow DUP Spokesperson (Human Rights), Shadow DUP Spokesperson (Health)
To ask the Secretary of State for Health and Social Care, what steps she is taking to raise awareness of myalgic encephalomyelitis amongst GPs and other doctors.

Helen Whately Minister of State (Department of Health and Social Care)
General Practitioners and other doctors are responsible for ensuring their clinical knowledge remains up-to-date as part of their continuing professional development.

The National Institute for Health and Care Excellence (NICE) published an updated guideline on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in October 2021, to improve awareness and understanding about ME/CFS. This guideline includes recommendations on diagnosis and management. NICE promotes its guidance via its website, newsletters and other media.
Click to expand...
Ah, so they're pretending that the medical associations did not announce that they rejected the guidelines and went ahead and did just that, have not budged on their pervasive refusal since. Despite everything Long Covid. Maximum chaos here and everything is fine and peachy and no one has to do anything.

Reality basically doesn't matter. Doesn't matter that everything about this disease is wrong and decades of pseudoscience are a complete and miserable failure. Doesn't matter that the guidelines explicitly say the patients have been discriminated and that there are no treatments. It doesn't even matter that the guidelines are not just rejected but defied, with many continuing to do the same thing they were already doing explicitly in ways that show they know and just don't care, like doing GET-by-lying and calling it pacing, the opposite of what it's about.

None of this actually matters. It's not relevant. Reality, real-life outcomes, I guess that's for sociologists, or something. If it doesn't happen in a clinic or hospital, as far as healthcare systems concerned it may as well not exist. Or even if it's seen in clinics, I guess, since LC is flooding healthcare with cases that are both noticed and also don't exist. This is beyond absurd.
 
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TiredSam said:
I've been following this thread for 29 pages and I still haven't seen anyone answer a question yet. It seems to be just a performance.
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only learned this week that this is a well established political tool called 'the pivot';
"If you have watched a debate, you have watched a pivot. "The pivot is a way of taking a question that might be on a specific subject, and moving to answer it on your own terms".
 
Baroness Scott of Needham Market
19:34
for bringing this important subject to the house today I have a very close
19:39
relative who has had me for a number of years now and I've seen it firsthand how
19:45
debilitating and life-changing it can be I've become the vice chair of the appg
19:51
for Emmy and I've talked to hundreds of me patients who have had their condition
19:59
ignored or ridiculed they've been subject to inappropriate and sometimes
20:04
dangerous medical interventions and I found them struggling with an employment and benefit system which simply doesn't
20:11
acknowledge the realities of their condition now those quarter of a million me
20:17
patients are now in effect being joined by over 2 million long covert sufferers
20:24
it's worth starting by pointing out that these debilitating post-infection syndromes like long covered are not new
20:31
clinical entities in American Medical literature there are any like symptoms
20:37
being described as far back as 1934. in this country when Emmy was first noticed
20:43
it was described as yucky flu Yuppie flu but in fact these syndromes affect millions of people suffering from a
20:50
range of viruses right across the the poor third world countries
20:56
The Institute for fiscal studies is estimating that one in 10 people with long covered have given up work and I
21:03
quote with persistent labor market effects in this month's Lancet they've
21:08
said post-acute infection syndromes could pose a substantial Public Health burden in the near future if appropriate
21:15
measures are not taken and yet despite the huge economic cost they inflict as Lord Bethel has said
21:22
post-viral illnesses have been neglected dismissed and under researched for far
21:27
too long and we still have no diagnostic blood tests for either long covid or me
21:34
as well as the breathlessness chest pains and loss of taste or smell which characterizes long covid
21:41
those patients also exhibit a cluster of symptoms such as debilitating fatigue
21:47
post-exertional malaise cognitive dysfunction pots and sleep disturbances
21:52
that are also diagnostic of me and other post-infection syndromes
21:58
and so while all the funding for Research into long covid must be welcomed it's disappointing that some
22:04
researchers are still either ignoring or are simply not aware of what has already been learned about what may be causing
22:11
me and how this could help us to understand the causes of long covid
22:16
almost 40 clinical trials for possible treatments for long covid have been registered some involving interventions
22:23
which have been already assessed in me some of these treatment trials have small sample sizes or have no control
22:30
groups and frankly the lessons don't appear to have been learned from the use of poor quality methodology in many
22:36
clinical trials involving me some health professionals who are managing people with long covered are
22:43
unaware or ignoring what we've learned about the management of me and other post-infection syndromes activity and
22:50
energy management particularly the me charity sector is producing excellent information on symptom and energy
22:57
management as does the new nice guideline but people with long covered are often simply unaware of this
23:03
information as our health many health workers another important lesson that needs to
23:10
be learned from me is that misdiagnosis can occur when people with chronic fatigue are not properly assessed and
23:17
are labeled as having a post-viral syndrome and there are now some very disturbing cases being reported of
23:24
people having long covid when in fact they have another medical condition a Suffolk counselor recently featured in
23:30
the news when it turned out that her long-standing diagnosis of long covid is
23:36
actually lung cancer Research into the cause and diagnosis and effective treatments for long covid
23:43
could help those with me and the me Association has requested that clinical
23:48
trials for long cover treatments could include a group with me what has been learned about the
23:54
management of me can help many people with long covered Harlan cromholtz a cardiologist at Yale
24:00
said this no one wanted the pandemic but sometimes a jolt to the system can create innovation in ways which wouldn't
24:07
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eta:
Hansard.........easier to read
12.51pm

Baroness Scott of Needham Market

(LD)
Share this specific contribution


My Lords, I thank the noble Baroness, Lady Thornton, for bringing this important subject to the House. I have a very close relative who has had ME for a number of years, and I have seen at first hand how debilitating and life changing it can be. I have become the vice-chair of the APPG for ME and I have talked to hundreds of ME patients who have had their condition ignored or ridiculed. They have been subject to inappropriate and sometimes dangerous medical intervention, and they are struggling with an employment and benefits system that simply does not acknowledge the realities of their condition. Those 250,000 ME patients are now, in effect, being joined by over 2 million long Covid sufferers.

It is worth starting by pointing out that debilitating post-infection syndromes such as long Covid are not new clinical entities. In American medical literature, ME-like symptoms are described as far back as 1934. When ME was first noticed in this country it was described as “yuppie flu”, but in fact these syndromes affect millions of people suffering from a range of viruses, including those living in poor, third-world countries.

The Institute for Fiscal Studies estimates that one in 10 people with long Covid have given up work, with “persistent labour market effects”. This month’s Lancet said that

“post-acute infection syndromes could pose a substantial public health burden in the near future if appropriate measures are not … taken”.

Despite the huge economic cost they inflict, as the noble Lord, Lord Bethell, said, post-viral illnesses have been neglected, dismissed and under-researched for far too long. We still have no diagnostic blood tests for either long Covid or ME.

As well as the breathlessness, chest pains and loss of taste or smell which characterise long Covid, patients exhibit a cluster of symptoms such as the debilitating fatigue, post-exertional malaise, cognitive dysfunction, PoTS and sleep disturbances that are also diagnostic of ME and other post-infection syndromes. While all the funding for research into long Covid must be welcomed, it is disappointing that some researchers are still ignoring or are not aware of what has already been learned about what may be causing ME and how this could help us to understand the causes of long Covid.
Almost 40 clinical trials into possible treatments for long Covid have been registered, some involving interventions that have already been assessed in ME. Some of these treatment trials have small sample sizes or no control groups. The lessons do not appear to have been learned from the use of poor-quality methodology in many clinical trials involving ME. Some health professionals who are managing people with long Covid are unaware of or ignoring what we have learned about the management of ME and other post-infection syndromes, on activity and energy management particularly. The ME charity sector produces excellent information on symptom and energy management, as does the new NICE guideline, but people with long Covid are often simply unaware of this information, as are many health workers.

Another important lesson that needs to be learned from ME is that misdiagnosis can occur when people with chronic fatigue are not properly assessed and are labelled as having a post-viral syndrome. There are some very disturbing cases being reported of people having long Covid when, in fact, they have another medical condition. A Suffolk councillor recently featured in the news when, it turned out, her long-standing diagnosis of long Covid actually proved to be lung cancer.

Research into the cause and diagnosis of, and effective treatments for, long Covid could help those with ME. The ME Association has requested that clinical trials for long Covid treatments include a group with ME. What has been learned about the management of ME can help many people with long Covid.

Harlan Krumholz, a cardiologist at Yale, said:

“No one wanted the pandemic, but sometimes a jolt to the system can create innovation in ways that wouldn’t have occurred otherwise”.



That should be our guiding principle.
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eta: Hansard
1.51pm

Baroness Meacher

(CB)
Share this specific contribution


My Lords, I applaud the noble Baroness, Lady Thornton, for bringing forward this incredibly important debate and for her outstanding introduction to it.

Long Covid is undoubtedly a serious challenge for the NHS and, as the noble Lord, Lord Bethell, said, for the economy, and a devastation for about 1.5 million people across the country. My principal reason for speaking in this debate is a concern that, for reasons that I simply do not understand, the chronic fatigue syndrome that too often results from the Covid virus is not linked in doctors’ minds, or indeed in many other minds, to the chronic fatigue syndrome that can be triggered by other viruses, and from which more than 1.5 million people suffer and have suffered for many years.

The principal symptom of chronic fatigue syndrome, as we know, whether it is triggered by Covid or by some of the virus, is extreme physical and mental tiredness that does not go away with rest or sleep. Sufferers find it difficult to carry out everyday tasks and activities and, as others have mentioned, too often they cannot work. This applies to the 1.5 million or more people with chronic fatigue who have had it for however long—for years, in many cases—and to those with chronic fatigue from Covid. They are exactly the same.

Other symptoms, as other noble Lords have mentioned, may or may not include muscle and joint pain, headaches, flu-like symptoms or feeling dizzy or sick. Covid-triggered chronic fatigue may also include a loss of taste and smell, and that is a slightly misleading piece of the jigsaw. In the main, chronic fatigue triggered by Covid and chronic fatigue triggered by another virus are indistinguishable other than by this rather weird issue of the loss of taste and smell. Does the Minister have any evidence to suggest that these two chronic fatigues that I have mentioned are in any way distinct, other than in this little piece, which I think is just a separate element of the consequences of Covid?

As someone who will have asthma for the rest of my life as a result of Covid, I also experienced a complete loss of taste and smell for several months after Covid. I am not just being self-indulgent; there is a point to bringing this in. It seems clear that the loss of taste and smell following Covid should be regarded as separate from chronic fatigue and separate from asthma or any other post-Covid illness. The fact that post-Covid chronic fatigue sufferers may lose their taste and smell should not suggest that it is in any way different from other post-viral chronic fatigue syndromes. They are surely identical, and medical treatment and research should focus on all types of chronic fatigue syndrome, including Covid related CFS. We know there has been a lot of money devoted to research because of long Covid; it is crazy for that money and research not to include other causes of chronic fatigue. It just cannot be right.

I very strongly welcome the focus of the noble Lord, Lord Bethell, on the alarming economic consequences of long Covid. Again, the economic consequences of chronic fatigue, whether triggered by Covid or any other virus, are eye-wateringly large.

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Urgent attention, both medical and in research, should be given to the prevention and treatment of chronic fatigue, however it is triggered.
I raise this issue in part because in the past chronic fatigue sufferers have experienced the most unpleasant stigma from doctors and others who tended to take the view that chronic fatigue was in no sense a physical illness, just something in the mind. Clearly, post-Covid chronic fatigue syndrome is acknowledged to be a physical response to Covid with a deeply unpleasant set of symptoms. It would be very helpful if the same understanding were applied to CFS triggered by other viruses or events. I will be grateful if the Minister can respond to this point, and to the important economic concern raised by the noble Lord, Lord Bethell, in his summing up.
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https://hansard.parliament.uk/lords...105F485-3B07-4020-AA3A-118870DCF534/LongCovid
 
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Tulip Siddiq Shadow Minister (Treasury)
To ask the Secretary of State for Health and Social Care, how much his Department plans to spend on biomedical research into the (a) causes, (b) consequences and (c) treatment of Myalgic encephalomyelitis in 2022-23.

Will Quince Minister of State (Department of Health and Social Care)[/paste:font]
The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR has provided approximately £4.4 million for research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since 2011. In addition, the NIHR and the Medical Research Council have jointly funded a £3.2 million study into genetics and ME/CFS. The study will analyse samples from 25,000 people with ME/CFS to search for genetic differences which may indicate underlying causes or an increased risk of developing the condition.
 
Sly Saint said:
Tulip Siddiq Shadow Minister (Treasury)
To ask the Secretary of State for Health and Social Care, how much his Department plans to spend on biomedical research into the (a) causes, (b) consequences and (c) treatment of Myalgic encephalomyelitis in 2022-23.

Will Quince Minister of State (Department of Health and Social Care)[/paste:font]
The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR has provided approximately £4.4 million for research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since 2011. In addition, the NIHR and the Medical Research Council have jointly funded a £3.2 million study into genetics and ME/CFS. The study will analyse samples from 25,000 people with ME/CFS to search for genetic differences which may indicate underlying causes or an increased risk of developing the condition.
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"The NIHR has provided approximately £4.4 million for research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since 2011."

Slippery answer. Biomedical I think not:

CS/08/08/06
Evidence based prevention, identification and treatment of chronic fatigue syndrome (CFS/ME) in children and young people
University of Bristol
Professor Esther Crawley
£816,199.28
28/02/2014

PB-PG-0609-19108
Chronic Fatigue Syndrome (CFS/ME) interventions within the Primary Care Setting: Developing resources for support and self-management in primary care.
NHS Central Manchester CCG
Dr Lisa Riste
£234,129.00
28/02/2014

DRF-2011-04-061
Mediators, Moderators, Mixtures and Model Averaging
King's College London
Ms Kimberley Goldsmith
£287,517.06
2011

PB-PG-0610-22060
Graded Exercise Therapy guided SElf-help Treatment (GETSET) for patients with chronic fatigue syndrome: a randomised controlled trial in secondary care
Barts Health NHS Trust
Professor Peter White
£343,008.00
01/04/2016

PB-PG-1010-23253
Early Intervention In Fatigue: A Feasibility Study
North Bristol NHS Trust
Dr Hazel O'Dowd
£214,613.00
01/08/2014

PDF-2013-06-011
CFS in the NHS: diagnosis of Chronic Fatigue Syndrome in primary care and outcomes after treatment by specialist services
University of Bristol
Dr Simon Collin
£320,885.66
31/12/2016

SRF-2013-06-013
Investigating the treatment of paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME).
University of Bristol
Professor Esther Crawley
£840,691.00
28/02/2019

RP-DG-1213-10001
Fatigue: acute fatigue Assessment and Management in Everyday practice (FAME)
Southern Health NHS Foundation Trust
Professor Paul Little
£99,962.00
01/06/2018

14/192/109
Investigating the effectiveness and cost effectiveness of using FITNET to treat paediatric CFS/ME in the UK
University of Bristol
Professor Esther Crawley
£1,026,403.00
01/05/2022

ICA-CL-2015-01-019
Developing an activity pacing framework for the management of chronic pain/fatigue
Pennine Acute Hospitals NHS Trust
Dr Deborah Antcliff
£108,331.00
31/01/2020

DRF-2016-09-021
Depression in paediatric chronic fatigue syndrome (CFS/ME)
University of Bristol
Dr Maria Loades
£317,866.00
28/02/2022

DRF-2017-10-169
Developing an effective intervention for younger children (5-11 years) with Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME)
University of Bristol
Miss Amberly Brigden
£222,971.00
01/04/2021

NIHR200509
Measuring Health in Children with CFS/ME: Refinement, application and evaluation of new PROM (PEACH) in routine practice.
Royal United Hospitals Bath NHS Foundation Trust
Professor Esther Crawley
£149,457.00
02/09/2022

Which I make as a not approximated: Total = £4,982,033 going to non biomedical research since and including 2011, or £4,694,515.94 excluding the 2011 award.


Numbers originally post at https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-406653 and https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-406657

Anyone in contact with Tulip Siddiq ?
 
CRG said:
"The NIHR has provided approximately £4.4 million for research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since 2011."

Slippery answer. Biomedical I think not:

CS/08/08/06
Evidence based prevention, identification and treatment of chronic fatigue syndrome (CFS/ME) in children and young people
University of Bristol
Professor Esther Crawley
£816,199.28
28/02/2014

PB-PG-0609-19108
Chronic Fatigue Syndrome (CFS/ME) interventions within the Primary Care Setting: Developing resources for support and self-management in primary care.
NHS Central Manchester CCG
Dr Lisa Riste
£234,129.00
28/02/2014

DRF-2011-04-061
Mediators, Moderators, Mixtures and Model Averaging
King's College London
Ms Kimberley Goldsmith
£287,517.06
2011

PB-PG-0610-22060
Graded Exercise Therapy guided SElf-help Treatment (GETSET) for patients with chronic fatigue syndrome: a randomised controlled trial in secondary care
Barts Health NHS Trust
Professor Peter White
£343,008.00
01/04/2016

PB-PG-1010-23253
Early Intervention In Fatigue: A Feasibility Study
North Bristol NHS Trust
Dr Hazel O'Dowd
£214,613.00
01/08/2014

PDF-2013-06-011
CFS in the NHS: diagnosis of Chronic Fatigue Syndrome in primary care and outcomes after treatment by specialist services
University of Bristol
Dr Simon Collin
£320,885.66
31/12/2016

SRF-2013-06-013
Investigating the treatment of paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME).
University of Bristol
Professor Esther Crawley
£840,691.00
28/02/2019

RP-DG-1213-10001
Fatigue: acute fatigue Assessment and Management in Everyday practice (FAME)
Southern Health NHS Foundation Trust
Professor Paul Little
£99,962.00
01/06/2018

14/192/109
Investigating the effectiveness and cost effectiveness of using FITNET to treat paediatric CFS/ME in the UK
University of Bristol
Professor Esther Crawley
£1,026,403.00
01/05/2022

ICA-CL-2015-01-019
Developing an activity pacing framework for the management of chronic pain/fatigue
Pennine Acute Hospitals NHS Trust
Dr Deborah Antcliff
£108,331.00
31/01/2020

DRF-2016-09-021
Depression in paediatric chronic fatigue syndrome (CFS/ME)
University of Bristol
Dr Maria Loades
£317,866.00
28/02/2022

DRF-2017-10-169
Developing an effective intervention for younger children (5-11 years) with Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME)
University of Bristol
Miss Amberly Brigden
£222,971.00
01/04/2021

NIHR200509
Measuring Health in Children with CFS/ME: Refinement, application and evaluation of new PROM (PEACH) in routine practice.
Royal United Hospitals Bath NHS Foundation Trust
Professor Esther Crawley
£149,457.00
02/09/2022

Which I make as a not approximated: Total = £4,982,033 going to non biomedical research since and including 2011, or £4,694,515.94 excluding the 2011 award.


Numbers originally post at https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-406653 and https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-406657

Anyone in contact with Tulip Siddiq ?
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It would be good if other people contacted her also.
 
How can they list those studies and claim they are "biomedical" with a straight face? This is clearly false and it takes all of 2 minutes to see it.

Oh, right, no accountability and no one involved at this level cares.
 
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