UK House of Lords/ House of Commons Questions

Tom Kindlon said:
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"Qualitative research with applicants, employers and delivery staff’, which included a case study for an applicant with ME.

The individual in question returned to employment in a call centre role after 10 years off due to ill-health. Through Access to Work, they received a suitable chair and keyboard, which greatly reduced the joint pain they had been experiencing and enabled them to stay in the new role."

I wonder when that was, and whether they are still working?
 
MeSci said:
"Qualitative research with applicants, employers and delivery staff’, which included a case study for an applicant with ME.

The individual in question returned to employment in a call centre role after 10 years off due to ill-health. Through Access to Work, they received a suitable chair and keyboard, which greatly reduced the joint pain they had been experiencing and enabled them to stay in the new role."

I wonder when that was, and whether they are still working?
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Call centre work typically involves long shifts...interesting that it only seemed to be the pain that was stopping them from working. No insult to people suffering pain. I would have thought that the cognitive processing in ME would also cause severe problems.
 
MeSci said:
"Qualitative research with applicants, employers and delivery staff’, which included a case study for an applicant with ME.

The individual in question returned to employment in a call centre role after 10 years off due to ill-health. Through Access to Work, they received a suitable chair and keyboard, which greatly reduced the joint pain they had been experiencing and enabled them to stay in the new role."

I wonder when that was, and whether they are still working?
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This is entirely "work will set you free" mentality. It's telling people to be content with breadcrumbs despite being declared "fully healthy" by some jackasses who pretend it's completely normal to have the same ability to function as an octogenarian all throughout your 20's.

I was a programmer. I was freaking good at it. I don't feel any hesitation it trumpeting all my damn horns about it, I was a very talented software developer. I should be working in the frontlines of the AI revolution. I have been waiting so long for this and have to sit on the sidelines while history I should be making is being made. I specifically tailored my experience and talents around this kind of work and some jackasses out there are saying I should be content with having a suitable chair and keyboard combo tailor-made to type some keys.

I'm really not feeling the damn "secondary benefits" and "illness identity" right now. No matter how many major jackasses may be insisting this is what is happening with me, I guess I'm just not actually into it. What a load of malarkey wrapped in larded bollocks.
 
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MeSci said:
"Qualitative research with applicants, employers and delivery staff’, which included a case study for an applicant with ME.
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https://assets.publishing.service.g...h-applicants-employers-and-delivery-staff.pdf

Interesting that this example is cited under Mental Wellbeing

The research found that in a few cases provision for applicants with physical conditions also had considerable benefits for their mental wellbeing, for example travel to work grants enabling them to come into their office for work instead of working from home, which had been isolating for them.
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Additionally, through knock-on wellbeing effects such as their reduced levels of stress, AtW also improved some applicants’ relationships with family and friends. For example, one applicant with Myalgic Encephalomyelitis (ME) returned to employment in a call centre role after 10 years off due to ill-health. Through AtW, they received a suitable chair and keyboard, which greatly reduced the joint pain they had been experiencing and enabled them to stay in the new role. This applicant went on to describe the wider benefits of this, including improved mental wellbeing:
“It has allowed me to go back to work, this reduces me having to claim benefits and also helps my employer as I am now back at work. It also helps my wellbeing and home life - I have more structure and purpose….it has all been positive…I’m in a better mood for my family.”
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very selective in their quoting; note also 'reduces me having to claim benefits' implying that they are still claiming. Also 'it also helps my employer' ?? howso?
 
Matt Hancock has kept his role as Health Secretary

Nicky Morgan is back in the Cabinet so won’t be able to be involved in backbench group working on ME anymore. Although obviously having someone who is fairly well informed about ME in the Cabinet will be useful if she is prepared to raise the issues informally with Hancock and his team.
 
Anne Main Conservative, St Albans
To ask the Secretary of State for Work and Pensions, what steps her Department is taking to tailor medical assessments for benefits to take account of the needs of ME sufferers.

Answer:
Justin Tomlinson The Minister of State, Department for Work and Pensions
Both the assessment for Personal Independence Payment (PIP) and the Work Capability Assessment (WCA) are functional assessments designed to respectively contribute towards the extra costs that arise as a result of a long-term health condition or disability, and to assess an individual’s capability to work. Both benefits are based on the impact of a person’s disability or health condition, not on the condition itself. This is important, as we recognise that the same condition can affect different people in different ways.

Assessors are provided with training and guidance in the full range of health conditions, including ME. For instance, all WCA assessors have access to a learning module on chronic fatigue syndrome (CFS)/ME, that is externally quality assured by an expert clinician. Furthermore, the PIP providers have recently been involved in a programme of engagement with CFS/ME stakeholders, and have developed a comprehensive suite of training products on CFS/ME.
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For instance, all WCA assessors have access to a learning module on chronic fatigue syndrome (CFS)/ME, that is externally quality assured by an expert clinician.
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So who's the "expert clinician"? From what I've seen of the learning modules in the past they aren't fit for purpose. Though I admit I haven't looked for more recent ones - suspect if there are more recent ones they prob won't be any better. Please let me know if they are!
 
Faisal Rashid Labour, Warrington South
To ask the Secretary of State for Health and Social Care, what steps he is taking to (a) update GP guidance and (b) increase GP awareness of the symptoms of chronic fatigue syndrome.

Caroline Dinenage Minister of State (Department of Health and Social Care)
General practice is where most patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) are likely to be managed, and the condition is identified as a key area of clinical knowledge in the Royal College of General Practitioners (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 2007, the National Institute for Health and Care Excellence (NICE) published the clinical guideline, ‘Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children. This sets out best practice in the diagnosis, treatment, care and support of people with the condition.


Rubbish answer.
 
Stephen Morgan Shadow Minister for Local Government (Communities), Shadow Minister (Defence) (Armed Forces and Defence Procurement)
To ask the Secretary of State for Health and Social Care, how much money from the public purse has been allocated to funding research on myalgic encephalomyelitis since 2010.

Stephen Morgan Shadow Minister for Local Government (Communities), Shadow Minister (Defence) (Armed Forces and Defence Procurement)
To ask the Secretary of State for Health and Social Care, if he will make an assessment of the effect of recent changes in the level of funding for research into myalgic encephalomyelitis on clinical understanding of that condition.

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Caroline Dinenage Minister of State (Department of Health and Social Care)
Between 2010-11 to 2018-19, the National Institute for Health Research (NIHR) and the UK Research Innovation have funded £6,976,001 of research on myalgic encephalomyelitis, also referred to as chronic fatigue syndrome (ME/CFS).

While funding fluctuates in response to projects funded, spend on ME/CFS has remained stable in recent years, ranging from around £700-850,000. Given that funding has remained stable, no assessment has been made about the impact of change in the level of research funding.
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same old same old :bored:

but at least the questions have started again, even if they always get the same non-replies.
Do MPs get to ask follow up questions?
 
Sly Saint said:
same old same old :bored:

but at least the questions have started again, even if they always get the same non-replies.
Do MPs get to ask follow up questions?
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They can ask as many written questions as they like although if it’s been answered before the answer can just refer back to previous responses. The responses like replies to MPs letters are put together by junior civil servants. Interesting these have come from a shadow minister the responses will likely have been seen at a more senior level in the civil service before going to the Minister’s office for approval. It’s only really oral questions and PMQs that has any interest up the ranks.
 
Sly Saint said:
same old same old :bored:

but at least the questions have started again, even if they always get the same non-replies.
Do MPs get to ask follow up questions?
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And what is the share of real research? 1%? 2%? Almost all of this was wasted on unrelated psychosocial fluff that does not qualify as credible science. Even the biobank is NIH-funded.

Still, even if that money actually had been spent on research it would be insulting and even then 90%+ of that insult is the double insult of not only spending so little but actually wasting it deliberately. Because we see that often, psychosocial ideologues saying that it has been researched for decades and hasn't yielded results, which is a reason to stop medical research funding, despite psychosocial approaches having yielded regression, which is somehow a reason to only fund their alternative discredited approach.

So when people point out that research has not progressed, well, you have to fund it first, research doesn't fund itself or magically produce useful findings by pretending to.
 
Sly Saint said:
same old same old :bored:

but at least the questions have started again, even if they always get the same non-replies.
Do MPs get to ask follow up questions?
Click to expand...
Can anyone account for all that money. It’s different to the figures we use.

In 2017-18 on the bbc news round (which unfortunately didn’t challenge the numbers spinning) , the official government statement was £3.5 m in past six years I think, so where’s it apparently all sprung from? For the £3.5 I was thinking it included fitnet etc, so In other words , total irrelevance to most of us.
 
Cinders66 said:
Can anyone account for all that money. It’s different to the figures we use.

In 2017-18 on the bbc news round (which unfortunately didn’t challenge the numbers spinning) , the official government statement was £3.5 m in past six years I think, so where’s it apparently all sprung from? For the £3.5 I was thinking it included fitnet etc, so In other words , total irrelevance to most of us.
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Between 2010-11 to 2018-19, the National Institute for Health Research (NIHR) and the UK Research Innovation have funded £6,976,001 of research on myalgic encephalomyelitis, also referred to as chronic fatigue syndrome (ME/CFS).
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from 2006 to 2016
"
Of the 20 grants identified in Table 2 above, Prof
Peter White (Queen Mary University of London and
Barts Health NHS Trust) has received most funding,
more than £3.5 million. Prof White and Dr
Crawley [£2.3 million] each hold four grants as principal applican
ts, so that eight of the 20 grants awarded were
held by two recipients."
https://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf
 
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Sly Saint said:
"
Of the 20 grants identified in Table 2 above, Prof
Peter White (Queen Mary University of London and
Barts Health NHS Trust) has received most funding,
more than £3.5 million. Prof White and Dr
Crawley [£2.3 million] each hold four grants as principal applican
ts, so that eight of the 20 grants awarded were
held by two recipients."
https://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf

eta:

It would be nice though if they could come back with something and get the actual stats on record.
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Those figures were from 2006 so a bit different time frame
 
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