UK House of Lords/ House of Commons Questions

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?

 

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.

 

Yes I think it is deliberately unclear. It obviously does not mean people who have depression nd long term conditions and ME as well. So it has to mean those who have depression and also those who have ME (because there is no way it can be for people who have diabetes and ME).

 

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.

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

 

Definitely both.

 

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.

 

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.

 

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:




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

 

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).

 

Also just archived a copy of:

Integrated IAPT (IAPT-LTC) Early Implementers Data Quality Guide Version 1.0, September 2017:

https://www.healthylondon.org/wp-co...APT-Early-Implementers-Data-Quality-Guide.pdf

on my site at:

https://dxrevisionwatch.files.wordp...apt-early-implementers-data-quality-guide.pdf

and attached.

Page 35:

 

Well that all looks terrible.

 

...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

 

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?