UK House of Lords/ House of Commons Questions

MeSci said:
Independent ethical review ensures that participant safety is at the centre of all research. In the United Kingdom, review by an ethics committee is one of a series of safeguards intended to protect the people taking part in the research. The operating procedure for trials in the UK has inbuilt safeguards designed to protect patients from harm in the event an intervention is ineffective or potentially harmful.
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The ethics committee didn't really approve the full Smile trial instead a sub committee (of 2 I think) approved a upgrading of a pilot study into a full trial. This they avoided real scrutiny. I suspect since the LP is a 'secret' process they also didn't have the chance to apply proper scrutiny to even the pilot study.
 
Jonathan Edwards said:
self-reported outcomes might have been biased, for example participants may have been more likely to report positive outcomes because they knew they were getting additional therapy in the LP group

Now this is crafty.

Participants might have been biased because they knew they were getting additional therapy. So the problem might not apply to trials where nobody got additional therapy, just different therapy? Or just therapy? It seems that the minister has been briefed by someone with a clear agenda in terms of where to steer the language - but perhaps not with much idea how to do that and make sense.
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Remember that the ethics committee and peer reviewers did not have information about LP so that makes it hard to understand the potential biases that may be caused due to the strong pressure within LP to say you are better and therefore be better.
 
Sly Saint said:
https://www.politicshome.com/news/u...oness-blackwood-6-population-will-be-affected
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Baroness Blackwood said:
I was undiagnosed for 30 years and went through all the usual experiences of the diagnostic odyssey – getting very sick from childhood and being referred to many doctors who each tried their best ordering more and more complicated and invasive tests.

Finally, a wonderful neurologist with experience of EDS realised what had been going on and referred me to a specialist who diagnosed me in 20 minutes. After all those years, 20 minutes was all it took. It was life-changing
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It really does seem there should be a specific care path for those whose condition remains undiagnosed, rather than the health system basically giving up. Specialist units for those still undiagnosed after 1 year or 2 at most, with at least the medical insights to know what other specialist units to send them to.

Is it medical incompetence that someone could remain undiagnosed for 30 years? Or is it a systemic failure of our health system?
 
Barry said:
Is it medical incompetence that someone could remain undiagnosed for 30 years? Or is it a systemic failure of our health system?
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That presumes that the diagnosis and interpretation are meaningful. At UCLH I am afraid I would not be confident of that in this area. It is not a specialist EDS diagnostic centre. Maybe best not to go in to individual people's histories though.
 
"Jon Ashworth Shadow Secretary of State for Health
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support the mental health of people with long term conditions.

Jackie Doyle-Price The Parliamentary Under-Secretary for Health and Social Care
On 21 March 2018, NHS England and NHS Improvement along with the National Collaborating Centre for Mental Health published 'The Improving Access to Psychological Therapies Pathway for People with Long-term Physical Health Conditions and Medically Unexplained Symptoms' which is available at the following link:

www.england.nhs.uk/wp-content/uploads/2018/03/improving-access-to-psychological-therapies-long-term-conditions-pathway.pdf

The guidance outlines the Improving Access to Psychological Therapies (IAPT) pathway, and accompanying benchmarks, to support the national expansion of IAPT services for adults with depression and anxiety disorders who also have long term conditions (such as diabetes, cardiovascular disease, chronic obstructive pulmonary disease or muscular dystrophy) and medically unexplained symptoms (such as chronic fatigue syndrome or irritable bowel syndrome). The expansion will see IAPT services co-located in existing primary and secondary care physical health pathways.

https://www.theyworkforyou.com/wrans/?id=2019-06-03.259231.h&s=Chronic+Fatigue+Syndrome#g259231.r0
"
Except of course this is not strictly speaking the truth. What they don't seem to understand or have been misinformed about, is that these 'services' for 'MUS' are actually being used to supposedly treat the underlying illness, not necessarily a comorbid mental health problem. Ergo MUS = mental health issue.
 
Sly Saint said:
The guidance outlines the Improving Access to Psychological Therapies (IAPT) pathway, and accompanying benchmarks, to support the national expansion of IAPT services for adults with depression and anxiety disorders who also have long term conditions (such as diabetes, cardiovascular disease, chronic obstructive pulmonary disease or muscular dystrophy) and medically unexplained symptoms (such as chronic fatigue syndrome or irritable bowel syndrome). The expansion will see IAPT services co-located in existing primary and secondary care physical health pathways.
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My bolding.

I wonder whether that is deliberately ambiguous.

It could mean
services for adults with depression and anxiety disorders who also have...chronic fatigue syndrome.

Or it could mean
services for adults with... and adults with chronic fatigue syndrome.

In other words it could mean you have to have anxiety or depression to be sent to IAPT, in which case why list any physical conditions, since IAPT is for anyone with anxiety or depression? Or it could mean it's a substitute for any CFS treatment or care. I suspect it means the latter.
 
My understanding from the full implementation guidance for 'IAPT-LTC' is that there is no requirement for anxiety or depression to be present to refer for MUS, though the document states that 70% of people with MUS will experience a depression or anxiety disorder.

p.6: The IAPT-LTC pathway introduced in this guidance outlines timely access to effective interventions for adults with LTCs who also have depression and anxiety disorders, or who have MUS.
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p.11: Person presents in the community or primary or secondary care with MUS or depression and/ or anxiety disorder
in the context of an LTC. - > Referral or self referral made to IAPT-LTC service
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However the PHQ-9 is used for the 'depression symptom measure' for CFS, IBS, and MUS not otherwise specified, along with the CFQ as the MUS measure for CFS. The GAD-7 is 'only used if "recommended measure for anxiety symptoms or MUS" is missing'.

The psychological therapy for CFS under the guidance is GET and a 'specialised form' of CBT, and the NICE Guidelines listed for MUS are CG53 for CFS/ME and CG61 for IBS (p. 23).

So they seem to presume depression/anxiety in MUS without requiring it for referral. They then 'treat' the MUS condition but not the presumed depression/anxiety. Finally, they measure depression in MUS referrals regardless of whether it was considered present at referral.

https://www.rcpsych.ac.uk/docs/defa...implementation-guidance.pdf?sfvrsn=de824ea4_2
 
Sly Saint said:
"Jon Ashworth Shadow Secretary of State for Health
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support the mental health of people with long term conditions.

Jackie Doyle-Price The Parliamentary Under-Secretary for Health and Social Care
On 21 March 2018, NHS England and NHS Improvement along with the National Collaborating Centre for Mental Health published 'The Improving Access to Psychological Therapies Pathway for People with Long-term Physical Health Conditions and Medically Unexplained Symptoms' which is available at the following link:

www.england.nhs.uk/wp-content/uploads/2018/03/improving-access-to-psychological-therapies-long-term-conditions-pathway.pdf

The guidance outlines the Improving Access to Psychological Therapies (IAPT) pathway, and accompanying benchmarks, to support the national expansion of IAPT services for adults with depression and anxiety disorders who also have long term conditions (such as diabetes, cardiovascular disease, chronic obstructive pulmonary disease or muscular dystrophy) and medically unexplained symptoms (such as chronic fatigue syndrome or irritable bowel syndrome). The expansion will see IAPT services co-located in existing primary and secondary care physical health pathways.

https://www.theyworkforyou.com/wrans/?id=2019-06-03.259231.h&s=Chronic+Fatigue+Syndrome#g259231.r0
"
Except of course this is not strictly speaking the truth. What they don't seem to understand or have been misinformed about, is that these 'services' for 'MUS' are actually being used to supposedly treat the underlying illness, not necessarily a comorbid mental health problem. Ergo MUS = mental health issue.
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That's a completely irrelevant answer.

IAPT has absolutely nothing to do with medical care for chronic medical conditions, which was the question. Like answering a question about wildfires and talking about a forest-raking program.

But it does reveal the modest proposal at the center of IAPT. Not that it's much of a mystery.
 
My impression is that EDS (the hypermobility one that conveniently has no identified genes) is the diagnosis du jour by some physicians who want to avoid the stigma of an ME/CFS diagnosis which, let's face it, is the most stigmatising diagnosis there is, possibly more than AIDS and schizophrenia. Kind of like how if a patient is presenting with pain as the chief complaint instead of fatigue (even though they all have fatigue and 'crashing' also) the rheumatologist will make a diagnosis of fibromyalgia because it sounds more sciency and Latin. If the patient presents with autonomic symptoms, the cardiologist or neurologist will make a 'diagnosis' of POTS or neurally mediated hypotension. And some allergy/immunologists are now diagnosing seemingly everyone with a constellation of vague symptoms with MCAS. Some years back everyone had Chiari. All these diagnostic fads detract from the clinical entity of ME/CFS.
 
rvallee said:
That's a completely irrelevant answer.

IAPT has absolutely nothing to do with medical care for chronic medical conditions, which was the question. Like answering a question about wildfires and talking about a forest-raking program.

But it does reveal the modest proposal at the center of IAPT. Not that it's much of a mystery.
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in their world IAPT is it for MUS - they think it is relevant - that its Emperors new clothes is what needs to be brought home to the politicians
 
Sid said:
All these diagnostic fads detract from the clinical entity of ME/CFS.
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That is the way I see it.

Something I only realised this week is that the idea that EDS is associated with fatigue, although hinted at briefly in the Rowe 1999 paper, is really introduced to the literature (i.e. on PubMed) by Knoop and Bleijenburg (in 2010), who of course are it the centre of the BPS view. It is quite uncanny.
 
Trish said:
My bolding.

I wonder whether that is deliberately ambiguous.

It could mean
services for adults with depression and anxiety disorders who also have...chronic fatigue syndrome.

Or it could mean
services for adults with... and adults with chronic fatigue syndrome.

In other words it could mean you have to have anxiety or depression to be sent to IAPT, in which case why list any physical conditions, since IAPT is for anyone with anxiety or depression? Or it could mean it's a substitute for any CFS treatment or care. I suspect it means the latter.
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Some of the first and second wave early implementer sites were specifically for CFS.

Integrated IAPT early implementers

https://www.england.nhs.uk/mental-health/adults/iapt/mus/sites/


Wave two Integrated IAPT sites
15 new sites unveiled in integrated IAPT expansion

https://www.england.nhs.uk/mental-health/adults/iapt/mus/wave-two-integrated-iapt-sites/


From one of the Bid call documents:

bid-call.png



Edited to insert links and link for document above:

Call to bid for funding for roll out of IAPT MUS and CFS services:

https://www.england.nhs.uk/wp-content/uploads/2016/12/mental-health-call-to-bid.pdf
 
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Dx Revision Watch said:
Some of the first and second wave early implementer sites were specifically for CFS.

Integrated IAPT early implementers

https://www.england.nhs.uk/mental-health/adults/iapt/mus/sites/


Wave two Integrated IAPT sites
15 new sites unveiled in integrated IAPT expansion

https://www.england.nhs.uk/mental-health/adults/iapt/mus/wave-two-integrated-iapt-sites/


From one of the Bid call documents:

bid-call.png
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So... expansion is happening without the planned assessment of its efficacy? There was a preliminary assessment a few months ago that showed the project fell way short of its expectations but haven't seen much about the final assessment since. It's clearly a complete failure and it's still going ahead. Figures.
 
In case that December 2016 IAPT Call to bid document in Post# 329 is removed from the england.nhs.uk site at some point, I've just archived a copy on my WordPress site:

Call to bid for funding for roll out of IAPT MUS and CFS services:

Here: PDF: https://dxrevisionwatch.files.wordpress.com/2019/06/mental-health-call-to-bid.pdf

and attached (though a copy might already be available from the S4ME MUS thread).
 

Attachments

Attachments

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Esther12 said:
Well that all looks terrible.
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...and some parts of the UK, for example, Devon, where GPs have been exposed to integrated MUS services, some patients with existing diagnoses of ME, CFS have been reassigned a MUS diagnosis.

"In some areas of the UK, specialist multidisciplinary services for Medically unexplained symptoms (MUS) and Persistent physical symptoms (PPS) are already in place or are in the process of being developed [1], while some dedicated services for CFS patients are being decommissioned in order to save money or absorbed into services for patients with chronic pain. Some UK patients have reported having their existing CFS, ME diagnoses challenged by their GPs and re-diagnosed with “MUS” or with a mental disorder in areas where MUS services have been commissioned."

Extract:
Comparison of SSD, BDD, BDS, BSS in classification systems Version 1 | July 2018, Chapman and Dimmock:
https://dxrevisionwatch.files.wordp...-bdd-bds-bss-in-classification-systems-v1.pdf
 
Dx Revision Watch said:
...and some parts of the UK, for example, Devon, where GPs have been exposed to integrated MUS services, some patients with existing diagnoses of ME, CFS have been reassigned a MUS diagnosis.

"In some areas of the UK, specialist multidisciplinary services for Medically unexplained symptoms (MUS) and Persistent physical symptoms (PPS) are already in place or are in the process of being developed [1], while some dedicated services for CFS patients are being decommissioned in order to save money or absorbed into services for patients with chronic pain. Some UK patients have reported having their existing CFS, ME diagnoses challenged by their GPs and re-diagnosed with “MUS” or with a mental disorder in areas where MUS services have been commissioned."

Extract:
Comparison of SSD, BDD, BDS, BSS in classification systems Version 1 | July 2018, Chapman and Dimmock:
https://dxrevisionwatch.files.wordp...-bdd-bds-bss-in-classification-systems-v1.pdf
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Isn't the UK adopting the SNOMED changes classifying it within neurology? Despite its poor relevance, NICE does not define it this way either, because it is not defensible by reliable evidence. Only the NHS does and only in internal documentation, always denied when asked directly. How can two mutually exclusive definitions coexist? There is still exactly zero basis in fact for the categorization of ME as a mental health condition.

Public agencies are not allowed to arbitrarily redefine things without providing a basis for it. The CFQ isn't even a valid assessment tool of any relevance to ME, how can such a mediocre end-point be used in official policy where there is zero accountability?
 
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