Forward ME Group – Bodily Stress Syndrome

A PDF version of the commentary posted on April 13, in response to my own proposal of March 28, 2017 for addition of Exclusions for CFS, BME, and PVFS under Bodily distress disorder, which has yet to be processed, is available to download from my website.

The joint proposal and rationale submitted by me and Mary Dimmock on March 27, 2017 had also included a request for exclusions under BDD.

ICD-11 Beta draft Proposal Mechanism

Comment

Suzy Chapman 2018-Apr-13 - 12:49 UTC

https://dxrevisionwatch.files.wordpress.com/2018/04/bdd-2.pdf

 

Using the NHS Digital Request Submission Portal search facility and searching for:

All Requests for SNOMED CT from 01/01/2000 onwards

throws up just two historical requests:

https://isd.hscic.gov.uk/rsp/user/guest/search/requests/all/criteria/form.jsf

Request 157

Type Add concept

Status Closed - Complete

Suggested name, term or description Myalgic Encephalitis

Priority Important

Brief summary of the request

Add Myalgic Encephalitis (or ME) Reason for change: key clinical conition treated at the Chronic Fatigue Syndrome/ME clinic

Description of the addition or change

Add Myalgic Encephalitis (or ME)

Reason for change: key clinical conition treated at the Chronic Fatigue Syndrome/ ME clinic

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

Request 138

Type Add concept

Status Closed - Complete

Hierarchy Clinical finding

Priority Important

Brief summary of the request

1. Please add the following clinical term to snomed CT- currently there is no listing of this condition or related synonym: Post Exertion Fatigue

Description of the addition or change

1. Please add the following clinical term to snomed CT- currently there is no listing of this condition or related synonym: Post Exertion Fatigue (a condition that would be referred under Chronic Fatigue Syndrome)

2. Please add the following terms that should be listed as well as chronic fatigue syndrome: Myalgic Encephalitis Myalgic Encephalopathy

Reason for change:

1. Key clinical diagnosis that will lead to referral under chronic fatigue syndrome

2. Key clinical pseudonym used interchangeably with Chronic Fatigue Syndrome

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

(No dates given for these requests and no submitter's name.)

So, no record of a submission to the managers of the SNOMED CT UK Edition requesting addition of 3 severity specifiers for CFS.

But I will request the history of the addition of these specifiers.

 

http://www.meassociation.org.uk/201...ut-possible-who-coding-changes-21-april-2018/


I am both disappointed and disturbed to note that the ME Association has linked to the initial version.


The initial version contains the following opinions held by Dr O'Leary:

"Criteria for BDD are not particularly problematic for ME patients. They are compatible with construing ME as a biological disease."

and

"What Can We Do About It?
It is very important to be clear and focused about the nature of the objection. 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. Both studies by the WHO support doing so, and an additional, independent study in Austria also supports doing so. This is the goal."


Caveat emptor.


These statements do not sit well with Forward-ME, AfME and the MEA's support in 2017 for the proposals submitted by me, and jointly with Mary Dimmock, for addition of exclusions for the G93.3 legacy terms under ICD-11's Bodily distress disorder.


However, the revised version is also problematic.

Suzy Chapman

Dx Revision Watch

 

I don't understand what that means, Suzy. But it's troubling me. Can you explain?

 

@Russell Fleming

Russell, please see your Inbox.

I am providing the ME Association with accurate, up to date information on:

1: SNOMED CT and changes to SNOMED CT Concept Bodily distress disorder
2: SNOMED CT and a change of Parent for Chronic fatigue syndrome
3: Changes to key ICD Revision personnel plus Timeline for release of an initial version of ICD-11 in June 2018
4: Status of decisions about PVFS, ME and CFS for ICD-11

 

Can you be more specific please, about what you don't understand?

 

Why is the O'Leary letter troubling? This is a very complex area with lots of jargon, and I think brainfog may prevent many people from understanding very much of any of this.

Am I right in thinking:
1. That you're asking for clarification and consistency around the term BSD or BSS?
2. That whichever label is used, there needs to be an exclusion for ME/CFS/PVFS?

I'm not sure whether you're saying BDD, BSD or BSS is better, or whether all are equally problematic. I'm also not sure what specifically needs to be achieved. Is it just an exclusion for ME/CFS/PVFS under whichever label is used? Is it that plus a single, clear criteria for BSS or whatever it's called? Is it that you want BSS, BSD or BDD removed altogether?

More practically, what is the impact you anticipate for any of this on ME patients? Is it simply a greater chance of misdiagnosis or inappropriate psychiatric treatment, or is there another issue too?

 

Yes. I don't know the specifics about ME organizations, here ME Association (?). Why did O'Leary practically say it's ok to mix ME and MUS/BDD and the like, and why is there no counter-statement (e.g. by Forward-ME)? Or is there? I think this is what I don't understand.
Ahh, O'Leary is from WHO, and she made hints as to a possibility that ME won't be excluded from BDD? But still I don't understand something...

Thank you, Suzy.

Edit: Ahhh, @adambeyoncelowe put it so much better

 

As submitted to MEA's website comments:

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

The MEA’s summary report of the Forward-ME meeting of 28 March contains the following links:

1 Two links to the Dr O’Leary “briefing document” entitled “BODILY STRESS SYNDROME” INFO SHEET” (Document #1).

2 A link for a response by the Countess of Mar, dated 9 April.

An additional revised document was published several days ago on the website of ME Research UK entitled “*IMMEDIATE ACTION NEEDED*” (Document #2).


As a result, there is now considerable confusion as to whether Document #1 has been replaced by the revised Document #2 or whether both Documents are intended to be in the public domain.

On MEA’s Twitter feed, it is stated that “The potential changes to WHO coding for M.E. and CFS are complex. The ME Association hope to add some further clarity very soon.”

I am making available to the MEA background materials which will provide the MEA with accurate and up to date information on:

The status of decisions about PVFS, ME and CFS for ICD-11;
Changes to key ICD Revision personnel and to key committees;
The Timeline for release of the initial version of ICD-11 in June 2018;
SNOMED CT and CFS, ME;
SNOMED CT and BDD.​

I hope the MEA will find this material of use when preparing any responses or other texts in relation to the revision of ICD-11, the forthcoming release of an initial version of ICD-11 and changes to SNOMED CT.

Should the MEA have any queries around the information that is being provided to them, please contact me and I shall be happy to provide clarifications.

On a general note:

The WHO plans to release an initial version of ICD-11 in June, this year. WHO plans to take the ICD-11 to the WHA assembly, in May 2018. But WHO will not be seeking endorsement of the ICD-11 until May 2019.

It is important to understand that the version released in June won’t have been completed:

. the scope of the ICD-11 MMS has been scaled back and not all chapters in this initial release may include “Description” texts for the terms included;

. there are over a 1000 proposals for addition of new terms or for edits to existing content that remain to be processed; many of these are too late for addition to the June release and will have to be reviewed for potential incorporation at a later date.

. external support is being recruited on a contract basis to assist in clearing the workload of preparing user guides and other editing tasks between June through to December, as there is insufficient WHO manpower and resources to complete the work;

. it is unclear now many of the user guidelines and companion publications, for example, the “Clinical Descriptions and Diagnostic Guidelines for ICD-11 Mental and Behavioural Disorders” publication that expands on the Mental, behavioural or neurodevelopmental disorders chapter of the core ICD-11 (similar to the current ICD-10 “Blue Book”) or how many of the other specialty stand alone publications that had originally been planned will have been completed by June 2018, and if not, when they will be completed or whether they may need to be delayed until the content of the core ICD-11 edition has been endorsed by the WHA or until the ICD-11 codings are more stable.

The version of ICD-11 that will be published in 2018 is for testing, evaluation and implementation according to countries’ specific timelines and requirements.

There is no WHO mandated date by which member states will be required to migrate from ICD-10 to ICD-11.

Dr Christopher Chute has predicted it will likely take early implementers around 5 years to evaluate and prepare their countries’ health systems for transition to ICD-11. So no countries will be ready to move onto ICD-11 for several years. NHS Digital has yet to issue a tentative timeline for evaluation and potential migration to ICD-11.

ICD-10 and SNOMED CT are the mandatory classification and terminology systems for use in the NHS.

 

Due to the work generated by the content of these documents, I will not have the time to set out in full all concerns about the statements, claims and opinions made within them.

However, in respect of Dr O'Leary's statement:

"Criteria for BDD are not particularly problematic for ME patients. They are compatible with construing ME as a biological disease."

Please see:

https://dxrevisionwatch.files.wordpress.com/2018/04/bdd-3.pdf

 

I'm still none the wiser. If this isn't in layman's terms, I think we'll struggle to get the community onboard.

More simply: what's the problem exactly and what do you want us to do about it?

 

It us complicated and i may have got this wrong
The problem is with 2 different sets of recoding many illnesses, especially chronic illnesses will potentially have a somatic code added to their illness ie be designated under MUS.

They will then essentially be " parked" with no investigation of further/ other symptoms other than being offered psychological interventions.

The move to remove stigma from mental illness has an undertone - this enables easier acceptance that some illnesses/ parts of illnesses are " all in your head" to deny physiological basis and treatment.

The conditions involved are varied and many - reducing costs is key.

I think it may be an idea to start a parliamentary petition to try and get these changes debated- like ACOs these seem to be flying under the radar until it is a done deal.

Perhaps @Russell Fleming , @Action for M.E. it is time to work with other chronic illnesses that will be affected?
This bodes well for noone except the treasury, and the hell that Bob suffered may become the norm.

 

I got this part, but don't understand what's wrong with the O'Leary document(s) or the info published by MEA or Forward-ME here? All I know is there's something supposedly troubling about O'Leary's comments on BDS/BSS/BDD, but I don't know which part is problematic or why. Is it which one of those terms they object to (should we object to all of them?)?

 

It is the comment that NE has nothing to fear from MUS i think

See the latest updates on this thread from other place
Lilpink explaims it better than i can

http://forums.phoenixrising.me/inde...ening-across-the-uk.48710/page-36#post-971963

 

I can't understand any of this only that it doesn't sound like it bodes well for us. Sometimes I feel like our battle is lost. I had an occupational health appointment during the week as part of my fit for work assessment. I explained to the doctor the devastation has had on my life. I am now severe, my dad drove me in. I had to lay flat all the way in the back of his car and same on way home. She was simply irritated by me, said ME was controversial and parted with the suggestion that if I feel better at any point during the next 6 months to let her know and that I could return to work??? Its just soul destroying and the reading this WHO shit....has anyone anything hopeful to say?? I can't see much light at the minute. And where are some decent publications, it feels like so little is happening. And as for Francis Collins, is increased funding a pipe dream, it sure feels that way.

 

By the way, Suzy, I would like to thank you that you post at several places, including s4me.

 

I feel like @Sunshine3. Can we do anything concerning this? Would a petition help, as @Amw66 suggests? Anything?