Forward ME Group – Bodily Stress Syndrome

Medfeb said:
Here's a post from Suzy on this letter on PR
http://forums.phoenixrising.me/inde...-me-patients-to-obtain-medical-support.58620/
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Thanks kindly for your continued work on this vital aspect of advocacy, likewise to Suzy. I did miss reading her informative posts on her 'taking an absence of leave' from the 'other place.' Likewise, last I checked on the dxrevisionwatch.com site a few days back, I noted there had been no updates since May 2017. Good to know that she is now once again posting information on the shenanigans surrounding the proposed changes to ICD classifications.

I do hope she is well, and please pass on my regards, if, as and when able. :)

Daisymay said:
So if this comes to pass, there will be a real risk NICE review will use the ICD primary care classification to their advantage and class ME/CFS as psych.
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Yes, would be my short answer. We have already seen here in the UK, how ME has been renamed ME/CFS, then renamed CFS/ME, and all too often, in actual practice, is further reduced to CFS, or even CF. So would not be a stretch to imagine in future, that we would just receive a diagnosis of MUS/BSS/BDS with no reference to CFS/ME at all?

As for a longer answer, I've had similar thoughts since NICE have agreed to a full review of our guidelines, which is not to be completed until 2020, yet they are seemingly, utterly incapable of doing the responsible thing in the interim, which would be to remove their recommendations for CBT/GET from the current guidelines.

Under the watch of NICE, local CCGs' are already implementing policies which would place us under a MUS/BSS/BDS 'umbrella', as lobbied for by the BPS adherents, with their willful misrepresentation of their own 'narrow' interpretation of their own evidence-base. These same adherents, who are also utterly incapable of acknowledging that their evidence-base for their views (and treatments), have no foundation, nor any place in reputable science. Not only that, but it would seem they are proactively extending their treatments of choice to other patient groups. :banghead:

Best end here, or will off on another rant .. ;)

Wishing everyone improved health, and every happiness. John :)
 
At this juncture, you might wish to know that SNOMED International accepted a formal request drafted by me for Forward-ME for the addition of new Parent:

SCTID: 118940003: Disorder of nervous system

to

SCTID: 52702003: Chronic fatigue syndrome

following the retirement of the Multisystem disorder Parent in January.

The retirement from the SNOMED CT clinical terminology system of the Parent term Multisystem disorder affected 90 Concept terms, including Chronic fatigue syndrome.

SNOMED managers intend this change to be available in the July 2018 International release of SNOMED CT. This will become available in the UK extension in October 2018.

From April 2018, SNOMED CT becomes mandatory for use in NHS primary care.

The adoption of SNOMED CT across all NHS settings is scheduled for 2020.



With regard to the issue of concern over statements made by Diane O'Leary in her "briefing paper", for example:

"Criteria for BDD are not particularly problematic for ME patients..."

and

"ME advocates have no reason to object to the basic criteria for BSS in the ICD for primary care, ICD-11-PHC. In fact, it is in the interests of ME patients to encourage the WHO to adopt just the basic criteria for BSS as they are currently in place..."


I have spoken to the Countess of Mar this afternoon and a statement is being issued on behalf of Forward-ME.

Until that statement is issued, I have no further comment.


Regarding the release of the ICD-11 core version. This is currently planned for release in June, this year. It is expected to take member states several years (3-5 or more) to prepare for transition to ICD-11. There is no mandated adoption date and member states will evaluate the new edition and transition at their own pace.

No date has been released for the completion and publication of the ICD-11 primary care edition, which is planned to comprise 28 mental disorders, which is two or three more categories than the previous version.

The ICD-10 and ICD-11 primary care editions are for mental disorders only.

Suzy Chapman
Dx Revision Watch
 
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Sunshine3 said:
I don't have a good understanding of all the goings on but is there a danger that the WHO will remove ME from the 'neurological' category into BSS? I so hope this is not likely...also when is this WHO update due to be finalised?
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For the core edition of ICD-11: the initial release is scheduled for June 2018 (likely on June 20).

The proposed category to replace the ICD-10 Somatoform disorders for the core ICD-11 is "Bodily distress disorder (BDD)". This has been adapted from the DSM-5's Somatic symptom disorder, and SSD is listed under Synonyms to BDD.


For the primary care edition: this publication is an abridged version of the ICD mental and behavioural disorders chapter only. ICD-10 PHC contained around 25 mental disorders. ICD-11 PHC is planned to contain 27 or 28 disorders - it does not contain any other chapters and it is not used by all member states.

The external work group making recommendations for the revision of the primary care edition is a different group to the group that has been making recommendations for the core edition.

For the primary care edition, the external group has proposed an adaptation of Fink's BDS, which it proposes to call "Bodily stress syndrome (BSS)". This would replace (if approved by WHO/ICD Revision) the existing F45 Unexplained somatic complaints/Medically unexplained symptoms category.

ICD Revision has not yet announced its decision about whether to use the BSS construct or a variation on the original criteria, as proposed in 2012, or whether to use the same BDD construct that is going forward for the core ICD-11 and which was also added to SNOMED CT, last July.

SNOMED have confirmed BDD has been added to SNOMED CT as an exact match for ICD-11's BDD concept and will map to ICD-11's BDD.


From April 2018, SNOMED CT is mandated for use in NHS primary care along with the ICD-10 core version. The primary care Read Codes (CTv3) are retired in April 2018 and replaced with SNOMED CT UK edition. From 2020, SNOMED CT is planned to be adopted across all NHS clinical settings.
 
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Hi,

The document from Dr Diane O'Leary released by ME Research UK is also up on the Forward ME Website in big red letters. I didn't see which came first.

Dr Shepherd and other Forward ME members met on 28th March with Dr O'Leary, and on his return we considered the document and what it might mean in practice.

To be perfectly honest I still find it confusing, and we agreed that releasing it in its current form would raise more questions - and anxiety - than it would answers.

So, we decided to defer release until such time as we could consult others in the group and better appreciate what it all might mean. I also reached out to Suzy Chapman today because I know of nobody else who follows these matters as closely.

  • I also noticed the 'psychiatric' and 'mental' which made the whole thing even more confusing.
I think Action for ME are also postponing comment until such time as they have reviewed the material and discussed with their new WHO lobbyist based in Geneva.

I had hoped the document wouldn't get published, but there was evidently a breakdown in communications somewhere.
 
Trish said:
Trying to get my head around this. Here's what I understand. Do correct me if I'm wrong.

The WHO has two different classification systems:

One overall one that classes ME/CFS as a neurological condition, and has BDD (bodily distress disorder) as a psychiatric condition, but does not include ME in this.
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Although the last annual update of ICD-10 (apart from correction of errors) will be in 2019, ICD-10 will continue to be used while member states prepare and transition to ICD-11 at their own pace and according to their country's requirements.

This will be a patchy and prolonged implementation process and for a period, data will be collected using both editions.

Once ICD-11 has been released in June, there will be limited updates for the first three years.

It won't be finished by June (which is one reason why they are delaying WHA endorsement until 2019) but they are planning to release an initial version anyway, so member states can begin the evaluation process; there are still hundreds of unprocessed proposals to be dealt with and ICD Revision has had to scale back on category Descriptions as so many have still to be drafted or edited. It is still riddled with errors.

In the current core ICD-10, PVFS and BME are classified under the Diseases of the nervous system chapter. CFS is indexed to G93.3.

In the current primary care edition there are only 26 or 27 mental disorders - no other chapters.

There is an F45 Unexplained somatic complaints/Medically unexplained symptoms category.

The ICD-10 primary care edition was a bit of flop and not found to be very useful in clinical use. It is not used in all member states and its target users were primary care, clinically untrained staff and low to middle income/low resource countries. Prof, Sir David Goldberg oversaw the current edition and was given the task of chairing the external committee for the revision. He is now 84.


For the ICD-11 core version, they are going forward with BDD (Bodily distress disorder). This is adapted from DSM-5's SSD and lists SSD under Synonyms. Like SSD, BDD can be added as an additional diagnosis to any disease or disorder, eg cancer + SSD; MS + SSD, CFS + SSD, angina + SSD, if the clinician considers the patients has "excessive" or "maladaptive" psychobehavioural responses to their symptoms.

For SSD and BDD, the symptoms don't have to be "medically unexplained".

SSD and BDD are very problematic for ME, CFS patients.


PVFS, BME and CFS were restored to the Diseases of the nervous system chapter of the ICD-11 core version Beta draft in March 2017 (the day before Mary and I submitted our proposal).

As Mary says, ICD Revision has confirmed that decisions about whether to propose a chapter relocation for CFS, ME are on hold, while a literature review is completed. (This review should have been done already by TAG Neurology which ceased operations in October 2016.) This also means that our proposal has not been processed.

Robert Jakob has already said that CFS, ME will not be classified under the MH chapter nor "dumped in the Symptoms, signs chapter".

WHO's Dr Dua, however, who was secretariat to TAG Neurology, is proposing a relocation to the Symptoms, signs chapter. The O'Leary document omits to mention that Mary and I have submitted a detailed rebuttal to that proposal.

The way things are going, even if the literature review is completed by mid April, it will then need to be passed to the MSAC for their consideration, which may take months. So it is likely that when the initial release of ICD-11 is published in June, the three terms will still be under the Diseases of the nervous system chapter. But new proposals for these terms (if any proposals do result out of the literature review) may be posted any time in the next year or two for public review and comment.

For the ICD-11 primary care edition, the external work group's proposal is for a BDS adaptation called, Bodily stress syndrome (BSS), for which IBS, CFS, ME, FM are not specifically excluded. No decision has been announced yet as to whether to use BSS or BDD for the primary care edition.

If they don't, there will obviously be a lack of concordance between the two editions, as BSS and BDD are conceptually different, have different criteria sets and capture different patient populations.


The other one specifically for Primary Care which is the one where a new classification called Bodily Stress Syndrome (BSS) may be introduced that is based on broad symptom clusters, and would include ME/CFS.

This would presumably give the green light to Primary Care providers world wide to dump anyone with symptoms within those broad symptom clusters into BSS and save a lot of money on investigations by directing them straight from primary care to psychological therapies.
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The primary care edition won't be mandated for global adoption by all member states. Some EU countries use ICPC-2, some use only the core ICD-10 version, many also use SNOMED as well as ICD-10, the US has its own version of ICD-10 and also DSM-5 for mental disorders.


Already, the F45 primary care category can be used in those countries that use the primary care edition or the one of the corresponding core ICD-10 F45.x categories can be used:

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

So the facility to code for MUS using a F45.x code, or for applying an additional F45.x code has been available to clinicians since the publication of ICD-10, in 1992, and since the publication of the primary care edition, in those countries that use the primary care edition.

This is exactly what the UK is already trying to do with their IAPT therapy clinics for MUS (medically unexplained symptoms) under their leading lights, Rona Moss Morris, Michael Sharpe, Trudie Chalder et al. And they are using PACE as 'evidence'.
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I have spoken to the Countess of Mar this afternoon and a statement is planned to be issued.

Did you email me Russell, as I've not received?

Suzy



Russell Fleming said:
Hi,

The document from Dr Diane O'Leary released by ME Research UK is also up on the Forward ME Website in big red letters. I didn't see which came first.

Dr Shepherd and other Forward ME members met on 28th March with Dr O'Leary, and on his return we considered the document and what it might mean in practice.

To be perfectly honest I still find it confusing, and we agreed that releasing it in its current form would raise more questions - and anxiety - than it would answers.

So, we decided to defer release until such time as we could consult others in the group and better appreciate what it all might mean. I also reached out to Suzy Chapman today because I know of nobody else who follows these matters as closely.

  • I also noticed the 'psychiatric' and 'mental' which made the whole thing even more confusing.
I think Action for ME are also postponing comment until such time as they have reviewed the material and discussed with their new WHO lobbyist based in Geneva.

I had hoped the document wouldn't get published, but there was evidently a breakdown in communications somewhere.
Click to expand...
 
This is all infuriating but I have a slight feeling that if these people go on changing names much longer they will talk themselves up their own backsides and their scheme will backfire. I suspect the political forces will do what they are going to do whatever the names are and if name changing has any impact in the long run it will be to destroy the credibility of ICD.

IAPT is clearly a specific practical concern. It looks like gibberish to me. I have it in my notebook to address later.
 
Sly Saint said:
"When primary care providers think the source of physical symptoms is psychiatric rather than mental"

don't they mean 'rather than biological' or is there a difference between psychiatric and mental?
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Dr O'Leary has replied to say that it should read "When primary care providers think the source of physical symptoms is psychiatric rather than medical, BSS will be the diagnosis"
 
Wow, this is pretty scary!

I think this whole MUS thing maybe started out a loooong time ago as a good thing, as a service to give help to people who had an illness we couldn't diagnose yet.

Somehow, through the years, it became a diagnosis on it's own (as MUS or BSS). And now the people that are invested in that theory actually fight for that (non-existent) diagnosis and against better biomedical explanations and better treatments. World upside down:banghead:
 
Andy said:
Dr O'Leary has replied to say that it should read "When primary care providers think the source of physical symptoms is psychiatric rather than medical, BSS will be the diagnosis"
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Which begs the questions:

a) How come this "briefing paper" wasn't carefully checked by its author for clarity, errors and misconceptions before being presented?

b) How come the parties who have already posted this document on their websites did not red flag a meaningless sentence before placing this document in the public domain?

And yes "medical" is not a good choice of word.
 
Dx Revision Watch said:
I have spoken to the Countess of Mar this afternoon and a statement is planned to be issued.

Did you email me Russell, as I've not received?

Suzy
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Hi Suzy,

Yes. I caught your exchange on LocalME and emailed a reply. So it should be part of that group discussion.

Thanks for your emails to me on this forum, I will try and read through them today and reply where necessary.

Unfortunately, it's so incredibly busy at the moment it looks like I will be trying to read-up on this issue over the weekend.

All the best

Russell
 
Russell Fleming said:
Hi Suzy,

Yes. I caught your exchange on LocalME and emailed a reply. So it should be part of that group discussion.

Thanks for your emails to me on this forum, I will try and read through them today and reply where necessary.

Unfortunately, it's so incredibly busy at the moment it looks like I will be trying to read-up on this issue over the weekend.

All the best

Russell
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Hi Russell,

I did not receive a message by you via Yahoo LocalME. I sometimes find Yahoo rejects messages or there is a delay of a day or two while messages are represented by the servers.

Suzy
 
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