UK House of Lords/ House of Commons Questions

[ME/CFS Skeptic]

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.

I assume you mean this one: Voermans et al. (2010) Fatigue is a frequent and clinically relevant problem in Ehlers-Danlos Syndrome.

 

[Jonathan Edwards]

I assume you mean this one: Voermans et al. (2010) Fatigue is a frequent and clinically relevant problem in Ehlers-Danlos Syndrome.

Yes, I realise Bleijenberg has no U.

 

[NelliePledge]

In my area which was in phase 1 or 2 of the MUS roll out the existing hospital clinic which did PACE lite rather than full on GET closed and the service joined up with community pain service. We’ve had a couple of people on the local Facebook group in the last couple of months saying they are being pressed to do GET. Things are going backwards around here apparently.

 

[rvallee]

I assume you mean this one: Voermans et al. (2010) Fatigue is a frequent and clinically relevant problem in Ehlers-Danlos Syndrome.

It's weird that there would be so few. I follow a few EDS tweeps and fatigue (in the actual, accurate definition and not a proxy for many other things) seems about as prevalent as with ME and MS, although there is way less concern in the literature than from patient testimony.

I guess that's what happens when there is something else to focus on, fatigue just takes a back seat. It's pretty clear that the literature on both ME and EDS is poorly defined because it mostly ignores patient experience and focuses entirely on what interests researchers. Supply-side medicine is such a dumb approach, leaving most of the relevant information on the table.

 

[Amw66]

...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

Here they are being rediagnosed with FND

 

[Jonathan Edwards]

It's pretty clear that the literature on both ME and EDS is poorly defined because it mostly ignores patient experience and focuses entirely on what interests researchers.

I think that is in a sense true but maybe not in the way you suggest. I am pretty sure that 95% of people in EDS groups do not have EDS in any useful sense of the term. If they have fatigue I think it is very unlikely it has anything to do with EDS. If they have PEM then presumably they have ME, which is probably 10 times more common than EDS. Chronic fatigue of an Oxford type may be 100 times more common.

The interests of 'researchers' into 'hEDS' is to have as many patients as possible, since most are in private's practice. The geneticists who deal with true EDS continue to say nothing about fatigue presumably because it is not actually an important problem for their patients. The Dutch paper was based on sending out a questionnaire to a patient association as I understand it.

 

[Dx Revision Watch]

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?

SNOMED CT International Edition and all national editions have already absorbed the Disorder of nervous system parent for CFS and its Synonyms terms.

 

[Sly Saint]

If, as they keep trying to say, IAPT is to deal with the mental health of patients, then why are only CFS patients given GET?

Just that alone, I would think, clearly indicates that they are 'treating' the illness and it has nothing to do with helping with their mental health.

 

[Dx Revision Watch]

@rvallee I needed to go out first thing this morning and didn't have time to give you a fuller response. But here it is:

Isn't the UK adopting the SNOMED changes classifying it within neurology?

SNOMED CT terminology system isn't structured into a series of chapters like ICD-10 or ICD-11.

SNOMED CT Concepts (unique, coded, machine readable terms) are defined by their relationship with other SNOMED CT Concepts.

Any given Concept (SCTID) term may be assigned a number of parents (known as "supertypes") which might span more than one chapter or more than one category block in ICD.

As an example, SCTID 127346000 | Neurologic disorder of eye movements (disorder) is assigned the Disorder or nervous system parent but is also defined by its relationship with all of the following parent Concepts:

Disorder of body system (disorder)
Finding by site (finding)
Eye / vision finding (finding)
Visual system disorder (disorder)
Disorder of eye movements (disorder)
Disease (disorder)
Clinical finding (finding)
Finding by site (finding)
Disorder by body site (disorder)
Disorder of body system (disorder)
Disorder of nervous system (disorder)


ICD-11 has moved in the direction of also defining ICD category terms by more than one parent, by introducing secondary and tertiary parenting.

For ICD-11, all categories are assigned to a "primary parent" chapter, but in some cases, a category may be secondary parented under a second chapter, or be assigned under an additional parent class within the "primary parent" chapter (aka the Linearization parent).

This means that for ICD-11, for example, skin neoplasms can be listed under both Chapter 14 Diseases of the skin and Chapter 04 Neoplasms.

So for SNOMED CT, CFS isn't classified "within neurology", as such, but is assigned these parent Concepts:

Disease (disorder)
Finding by site (finding)
Disorder by body site (disorder)
Disorder of body system (disorder)
Disorder of nervous system (disorder)

whereas before the change was approved, it was assigned only these two parents (because the Multisystem disorder Concept term had been retired across the entire terminology system for the January 2018 release of the International Edition):

Disease (disorder)
Finding by site (finding)


Continued in next post.

 

[Dx Revision Watch]

SNOMED CT UK Edition incorporated the addition of the Disorder of nervous system parent for CFS and its Synonyms terms for its October 01, 2018 release, absorbing it from the July 2018 International Edition release.

Since April 2018, SNOMED CT has been the mandatory terminology system for use in NHS primary care and forms an integral part of the electronic patient record (EPR) at the point of contact.

Some secondary care settings are already using SNOMED CT as the terminology system embedded within their electronic medical record systems.

But SNOMED CT is planned to be implemented across all NHS secondary care, acute care, mental health, community systems, dentistry and other systems used in direct patient care by 1 April 2020.

So the NHS is currently focussed on the implementation of SNOMED CT across all settings and now has to start planning for eventual implementation of ICD-11.

SNOMED CT terminology and ICD serve different purposes.

For an overview of clinical coding for non coders and how ICD-10 and SNOMED CT integrate, see PP slides:

Coding for non coders - NHS Digital

https://hscic.kahootz.com/gf2.ti/f/762498/30719205.1/PPSX/-/Coding_for_non_coders_automaticnew.ppsx



I'll be gone in a couple of weeks, but something UK patients and advocates need to be aware of:

In the SNOMED CT International Edition and the various national editions there are Concept codes for:

161904006 | Unexplained symptoms continue (finding)

and

702537003 | Medically unexplained symptom (finding)


But the SNOMED CT UK Edition has an additional Concept term, which is unique to the UK Edition:

887761000000101 | Medically unexplained symptoms (finding)


One of the complaints within the MUS guides for providers of services was the absence of a specific code for MUS in secondary care (ICD-10). Providers were being advised to assign one of the ICD-10 F45 codes or F48.*

SNOMED CT codes are mapped to ICD-10. If a machine readable term is entered into the EPR, the SNOMED CT Concept code for that unique term can be automatically generated and if required, mapped to the equivalent ICD-10 code.

The UK specific 887761000000101 | Medically unexplained symptoms (finding) is currently mapped to ICD-10's:

R68.8 Other specified general symptoms and signs


In the SNOMED CT UK Edition, 723916001 | Bodily distress disorder (disorder) is currently mapped to ICD-10's:

F45.9 Somatoform disorder, unspecified

--------------------------

Edited to insert:

*http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/MUS-whole-systems-approach.pdf

Medically Unexplained Symptoms (MUS)
A whole systems approach

July 2009 – December 2010

Page 20

"It may be possible within the new polyclinic model that the routine of psychologists working with consultants would develop. Equally, they could work in hospitals in more structured ways such as a ‘pelvic pain’ clinic.

"We would suggest that one consultant in each department should lead on this area of the work, helping other consultants to think about difficult presentations, ensuring patients can access the psychologist appropriately and reviewing the care of patients where no biological explanation can be found. At present, patients are referred back to primary care or on to another secondary care department, thus allowing the clinician to maintain the idea that medically unexplained symptoms are not part of their work.

"It will be necessary for acute clinicians working in these clinics to code patients that they feel may have MUS. There are often no codes available to do this in these specialities. We would advise therefore that the ICD codes F44, F45 and F48 are used as ‘catch-all’ codes. These would include any situation where the clinicians felt there was an element of MUS affecting the patient and their management. This is necessary in order for outcomes to be quantifiable. These codes are to be used to monitor outcomes; clinicians can use the codes where appropriate, in conjunction with other codes."

----------------------

NB: Note that under F48.0 Neurasthenia (and its inclusion: Fatigue syndrome) there is an exclusion (Excl.) for G93.3.

Also note:

But there are no exclusions for G93.3 under the ICD-10 F45.x codes.

An additional F45.x diagnosis can in theory be assigned in association with an existing or new diagnosis of G93.3, or in association with any other disease or condition if the practitioner considers the patient also meets the criteria for an F45.x disorder.

 

[Dx Revision Watch]

In the big IAPT, MUS thread on PR there is an NHS Digital document on "Transition from Read to SNOMED CT in general practice systems, June 2018" and handling legacy coding/dual coding during the transition period from Read to SNOMED CT:

Post #773:

https://forums.phoenixrising.me/thr...ats-happening-across-the-uk.48710/post-992067



See also Posts #683 (and a correction in #703) for more on coding of MUS, FM, CFS, LCTs in IAPT services (compiled by lilpink):

https://forums.phoenixrising.me/thr...ats-happening-across-the-uk.48710/post-971513

https://forums.phoenixrising.me/thr...ats-happening-across-the-uk.48710/post-971838

and Post #721:

https://forums.phoenixrising.me/thr...ats-happening-across-the-uk.48710/post-972875

 

[MeSci]

https://www.parliament.uk/business/...s/written-question/Commons/2019-06-19/266885/

Stephen Morgan

To ask the Secretary of State for Health and Social Care, what assessment he has made of the effectiveness of the existing NICE guideline on myalgic encephalomyelitis.

https://www.parliament.uk/business/...s/written-question/Commons/2019-06-19/266886/

Stephen Morgan

To ask the Secretary of State for Work and Pensions, what recent steps she has taken to support people with Myalgic Encephalomyelitis in the workplace.

https://www.parliament.uk/business/...s/written-question/Commons/2019-06-19/266887/

Stephen Morgan

To ask the Secretary of State for Work and Pensions, what steps she is taking to ensure that job centre staff are aware of the effect of myalgic encephalomyelitis on an individual's ability to work.

https://www.parliament.uk/business/...s/written-question/Commons/2019-06-17/265433/

Mr Barry Sheerman

To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure the adequacy of provision of local (a) services and (b) for people with Chronic Fatigue Syndrome.

 

[It's M.E. Linda]

I have just discovered that Baroness Blackwood has a history of ME. More recently she has had diagnoses of EDS and POTS.

More interesting news from FB, from Darren Jones MP Bristol, North West (he has been a keen supporter of PwME for some time, thanks to the efforts of constituents. Also a member of the Science and Technology Committee with Carol Monaghan).

Nicola Blackwood (Baroness Blackwood) represents the Government in all aspects of Health in the House of Lords.

She has spoken openly about her struggles to be diagnosed and her life with Ehlers Danlos Syndrome.

[As she works as a Minister and practices Pilates, can we presume that EDS seems to be her primary diagnosis, rather than any historical possibility of ME? In any event, her search for answers, frustration of living with an invisible illness and campaigning for research for a little known disease should hopefully make her a useful ally.
https://www.oxfordmail.co.uk/news/1...t-ehlers-danlos-and-collapse-at-dispatch-box/]

 

[Sly Saint]

Hywel Williams Shadow PC Spokesperson (Work and Pensions), Shadow PC Spokesperson (Brexit), Shadow PC Spokesperson (Cabinet Office), Shadow PC Spokesperson (International Trade)
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure ME clinics and treatment centres are aware of the risks of graded exercises to sufferers of ME.

Reply:

Seema Kennedy The Parliamentary Under-Secretary for Health and Social Care
The National Institute for Health and Care Excellence (NICE) guideline for ‘Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) (or encephalopathy): Diagnosis and management of CFS/ME in adults and children’, was published in 2007 to support clinicians in the diagnosis, treatment, care and support of people with ME. This sets outs evidence-based best practice for the management of people with the condition and assists commissioners in planning services for local populations. The guideline recommended graded exercise therapy as a safe and appropriate treatment for mild to moderate CFS/ME, in line with the best available evidence.

The NICE guideline acknowledges that there is no one form of treatment to suit every patient and that treatment and care should take into account the personal needs and preferences of the patient. Decisions concerning the appropriateness of treatments should be made by on a case by case basis, and in discussion with patients, and their families or carer, if appropriate.

On 20 September 2017, NICE announced its decision to undertake a full update of the guideline following a review of the latest available evidence on the diagnosis and management of CFS/ME and a public consultation. New guidance is expected in October 2020. More information on this update can be found at the following link:

www.nice.org.uk/guidance/indevelopment/gid-ng10091

https://www.theyworkforyou.com/wrans/?id=2019-06-27.270309.h

 

[MEMarge]

Another non answer.

 

[ladycatlover]

The guideline recommended graded exercise therapy as a safe and appropriate treatment for mild to moderate CFS/ME, in line with the best available evidence.

If I can summon the energy I feel a letter to my MP coming on. Telling her that the "best available evidence" is about as useful as a dog turd. Though I wouldn't quite use that wording of course!

 

[Barry]

If I can summon the energy I feel a letter to my MP coming on. Telling her that the "best available evidence" is about as useful as a dog turd. Though I wouldn't quite use that wording of course!

I would suggest that the dog turd is actually much better, being tangible evidence the dog produced something clearly important to its ongoing health.

 

[Tom Kindlon]

 

[Tom Kindlon]

 

[Tom Kindlon]