A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Forward ME Group: Minutes for meeting held on 24 May at House of Lords

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Jul 12, 2016.

  1. charles shepherd

    charles shepherd Senior Member

    Minutes for the last Forward ME Group meeting that was held at the House of Lords on May 24th are now up on the Forward ME Group website and in the news feed on the MEA website home page:


    The group discussed a wide range of topics relating to NHS and private (Burrswood Hospital) hospital based services, the NICE guideline, the PACE trial, SNOMED classification of ME/CFS, DWP benefits and Research matters

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
    TiredSam, MEMum, Scarecrow and 3 others like this.
  2. Sasha

    Sasha Fine, thank you

    In relation to PACE (I've broken it up for easier reading):

    What's a judicial review? If it's in with a chance of getting something done about PACE, that might be money well spent - PACE is influential in the ongoing severe potential harm to all NHS patients who are being recommended GET.
    TiredSam, MEMum, Valentijn and 4 others like this.
  3. Sasha

    Sasha Fine, thank you

    That's a pity - is there anything you can say about this, @charles shepherd? I'd thought that the group had tried to persuade that guy from NHS England to do something about this? Won't he act?

    Thank you for all your hard work on this committee, BTW!
    Valentijn, MeSci and worldbackwards like this.
  4. Bob


    England (south coast)
    It's a process whereby the courts make a decision on the legality of decisions made by the government and government bodies. So, with respect to NICE, a court might be asked to judge whether NICE had followed proper procedures when assessing the evidence for their decisions in relation to ME/CFS. A court may or may not get involved in the nitty-gritty of whether a single study was legitimate but I think it's more than likely that the court would accept that it was an academic argument and that NICE was within its remit to accept the evidence that was published. So I'm pretty convinced that it would be a waste of time and resources. (It would especially be a waste of resources if the judge went to the same school as the editor of the Lancet.)
    MEMum, mango, Valentijn and 6 others like this.
  5. sarah darwins

    sarah darwins I told you I was ill

    Cornwall, UK
    Less than half what QMUL just spent on lawyers to block data release, then.
    Comet, BurnA, MEMum and 9 others like this.
  6. charles shepherd

    charles shepherd Senior Member

    Yes, we have also met (see relevant FMEG minutes) with a senior doc from NHS England (Dr McShane) and had follow up correspondence with him but we are currently in an almost 'banging head against a brick wall' situation with both NICE and NHS England. They both appear to accept that we are making some valid points about the NICE guideline on ME/CFS but neither are willing to set the process of a formal review in motion.
    Hutan, Comet, MEMum and 8 others like this.
  7. Sasha

    Sasha Fine, thank you

    I think this should be a major point in the UK #Millions Missing campaign then - those guidelines are affecting every UK patient for the worse, every single day, and they've got to go. I think it should be at top of the list, along with funding - and it's achievable much more directly and faster than funding (where I anticipate a load of evasive waffle).

    Have they said why they're not willing to set a formal review process in motion?

    @JaimeS, who should we tag on PR about this stuff? I don't want to burden Jen by tagging her on this kind of thing. It would be good to have a way for people to direct suggestions to the campaign. Not everyone will want to get on #MEAction's platforms (FaceHorror, GoogleTerror, etc.).
    Comet, MEMum, Valentijn and 3 others like this.
  8. Invisible Woman

    Invisible Woman Senior Member

    Well, if they can't, or won't, who can?

    Perhaps, if they realized that, ultimately, they too will be held responsible for the ongoing damage and neglect the pwME face they would be more inclined to stop sitting on their hands.

    I am very grateful for all of the hard work you do @charles shepherd (and the Countess of Mar and many others). It's just...I'm running out of time. I've been watching this play out for nearly 20 years now and enough is enough.

    Perhaps we could crowd fund a name and shame advert in one of the big papers?
    The researchers know it, NICE know it, NHS England know it: but they still continue to keep medical staff in the dark. These staff then go on, in their ignorance, to push medical treatments that are potentially very harmful to most patients. One day you could be one of those patients. This type of thing.
    Comet, MeSci and Keela Too like this.
  9. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

    @ Dr Shepherd

    By all means pass the following information on to Forward ME Group committee:

    Extract from Minutes (my emphasis):


    "5. SNOMED
    5.1 Christine Harrison said she had asked the Chairman to write to them. They had replied to the effect that ME, under various different titles, could be found on their website. But when she had tried to access it she was unsuccessful. She had found CFS, and “myalgic” which cross-referenced to CFS, but ME did not appear to exist in the SNOMED system. So if your GP were to diagnose you with ME, that would not be recorded in SNOMED. The Chairman said she would write to them again. Mrs Harrison said she would e-mail the correspondence to the Chairman.

    5.2 Members discussed the problem of different parts of the NHS having different computer systems. Dr Worthley said that on the system he used the only classification was Read Codes; SNOMED was not there. Mrs Harrison said that might change when his system was upgraded."​

    To clarify:

    The UK Extension for SNOMED CT can be publicly accessed here, on a free Browser:



    A search for "Myalgic encephalomyelitis" provides the following terms amongst the "matches" offered:

    Myalgic encephalitis
    Myalgic encephalopathy
    Myalgic encephalomyelitis
    ME - Myalgic encephalomyelitis
    Benign myalgic encephalomyelitis
    Myalgic encephalomyelitis syndrome

    Within SNOMED CT (for the International "core" version and the various country extensions) these terms are listed under Synonym terms for " Chronic fatigue syndrome".

    SCTID: 52702003 Chronic fatigue syndrome (disorder) viewed under the "Summary" tab:

    displays under a single Parent:


    Multisystem disorder (disorder)

    SCTID: 52702003

    52702003 | Chronic fatigue syndrome (disorder) |

    [Synonym terms]

    Myalgic encephalitis
    Myalgic encephalopathy [included for the UK SNOMED CT extension]
    Iceland disease
    Benign myalgic encephalomyelitis
    Chronic fatigue syndrome
    Myalgic encephalomyelitis syndrome
    ME - Myalgic encephalomyelitis
    Myalgic encephalomyelitis
    CFS - Chronic fatigue syndrome
    Chronic fatigue syndrome (disorder)

    Viewed under the "Details" tab for:

    SCTID: 52702003 Chronic fatigue syndrome

    Great Britain English language reference set

    Chronic fatigue syndrome (disorder) is specified as the "Preferred" term.

    The alternative terms listed above are specified by an "S" (for Synonyms) and specified as "Acceptable" terms.

    So the terms:

    Benign myalgic encephalomyelitis
    Myalgic encephalomyelitis

    (and for the UK SNOMED CT extension) Myalgic encephalopathy

    are searchable terms within SNOMED CT and they display listed as Synonyms under SCTID: 52702003 Chronic fatigue syndrome.


    Postviral fatigue syndrome

    Prior to July 2015, all editions of SNOMED CT had the following listings for CFS, ME and PVFS:

    Chronic fatigue syndrome (with ME – Myalgic encephalomyelitis and several other related and historical terms listed under Synonyms) was at that point assigned under two parent disorder classes:

    Mental disorder and Multisystem disorder.

    Postviral fatigue syndrome was listed under Children to Chronic fatigue syndrome.

    This arrangement changed last year ( see Forward-ME Correspondence re SNOMED added June 2015 ) with the dropping of the Mental disorder parent for CFS and its Synonym terms.

    This change was applied, initially, to the core International SNOMED CT version and then adopted by all versions of SNOMED CT, as the twice yearly updates to the various country extensions were released.

    There was also a change, last year, for Postviral fatigue syndrome.

    In SNOMED CT core International version and country extensions, Postviral fatigue syndrome now has a different code to Chronic fatigue syndrome and is no longer listed under Children to Chronic fatigue syndrome.


    The SNOMED CT code for Postviral fatigue syndrome is

    SCTID: 51771007 Postviral fatigue syndrome After → Viral disease

    and it has two parents:

    Multisystem disorder (disorder)

    Post-viral disorder (disorder)


    In sum: within SNOMED CT, Benign myalgic encephalomyelitis, Myalgic encephalomyelitis and (in the UK Extension), Myalgic encephalopathy, are listed under Synonyms under SCTID: 52702003 Chronic fatigue syndrome

    under single Parent: Multisystem disorder (disorder).

    Whereas SCTID: 51771007 Postviral fatigue syndrome is coded separately under two Parents:

    Multisystem disorder (disorder)
    Post-viral disorder (disorder).

    In November 2015, it was confirmed to me by Karim Nasha, Terminology Specialist, UK Terminology Centre, Health and Social Care Information Centre, that the final update release for Read Codes CTV3 would be changed to reflect the change to SNOMED CT.

    "I have moved Xa01F | Chronic fatigue syndrome under a single supertype 281867008 | Multisystem disorder (disorder) as to reflect the SNOMED correction in CTV3...This should be reflected in the April 2016 CTV3 release." (by email 20.11.15)


    Read Codes

    Read Codes Clinical Terms Version 2 and 3 are being retired in favour of adoption of SNOMED CT as a single terminology system.

    Read Codes are a coded thesaurus of clinical terms for recording patient findings and procedures in health and social care IT systems across primary and secondary care, e.g. GP surgeries and reporting of pathology results.

    The National Information Board (NIB) has specified that all primary care systems adopt SNOMED CT by the end of December 2016 and that SNOMED CT is to be used as the single terminology in all health care settings in England, with a projected adoption date for the entire health system of April 2020.

    Information on the schedule for phasing out of Read Codes version 2 (v2) and version 3 (CTV3 or v3) can be found on this page:


    If you or Forward ME Group committee require further clarification, please let me know. I shall be forwarding a copy of this information to Sonya Chowdhury.

    Information in this post is also set out on my site Dx Revision Watch

    Changes to SNOMED CT and Read Codes (CTV3) for CFS, ME and PVFS

    Post #327 | December 28, 2015


    Suzy Chapman
    Last edited: Jul 13, 2016
  10. Chrisb

    Chrisb Senior Member

    Presumably the regulations which established NICE foresaw the possibility that circumstances and best practice might change. Did they not impose some duty on those tasked with overseeing the guidelines? Is there any reasonable doubt as to whether NICE, and its officers, are complying with any duties which they may have?

    Apologies. I should be able to discover this for myself, but it is largely beyond me.
  11. frog_in_the_fog

    frog_in_the_fog Test Subject

    This is the part I liked.
    A dialog is happening, the unraveling of PACE continues...
    JaimeS likes this.
  12. JaimeS

    JaimeS Senior Member

    Mid-Ohio Valley, United States
    I don't know who of the group is on PR, but L.A. Cooper is big in planning MillionsMissing for the UK.

    I have let her know about this thread!
    Johannawj, Keela Too, MEMum and 2 others like this.
  13. olliec


    London, UK
    LA Cooper is already making great strides helping coordinate the next UK MillionsMissing protests (plural) and I'm helping out a bit, but we desperately need more volunteers. Can you organise an event (of any size) at a key location near you? Oxford, Bristol, Cambridge, Belfast, Edinburgh, Cardiff, Birmingham, Newcastle, Manchester? Can you help with any of the following: writing press releases, transporting shoes/banners, writing copy for the protest handouts, creating banner/poster slogans, organising printing of t-shirts and shipping to the protest locations, identifying and considering, protest locations, ascertaining the law/rules about protests at the specific locations, writing to MPs before/after the event, posting/tweeting live during the protest (to disseminate photos from the event), refining our key messages, encouraging healthy allies to attend, asking celebs to share our messages/photos, manning social media accounts, taking/editing event photos/video, finding and asking notable folk to speak at the protests, etc etc. The goals of the protests are to embarrass and apply pressure to those letting patients down and to get our message across through the press (that we are far sicker than people realise, and the research funding is utterly inadequate).

    Obviously patients can't do much individually, but if we each take on a little piece it all adds up quickly, and there's lots that can be done remotely, without attending the actual protest. I didn't make the May protest in London but did help from home, and family went to the protest on my behalf.

    I've been sick for seventeen years and I'm not prepared to tolerate this indefensible state of affairs where we are abused and lives destroyed by careerist "researchers" who give us the finger every time they release one of their ridiculous flawed "studies". It's not science, it's funding lobbying. But to bring about change we have to figure out how to work together in the UK and abroad and make it happen, within our limitations. So the (big) challenge is to work out how we can join hands and mobilise further en-masse to effect change, and that probably means very large numbers of us taking a mouse-bite each, and bringing in healthy allies. So PLEASE consider what you can do, and offer your help.

    MEAction Network UK (led by LA Cooper) is coordinating but needs a lot of help. This is not just about one protest, but about building a network of volunteers (patients and healthies), tools and resources to assertively lobby and grow stronger, so work done for this protest will be used as a foundation for the next one, and the next one, and the next one, until the politicians start to listen - each time we learn how to do it better. We also need to be ready to make use of incoming resources like some research ongoing and Jen Brea's TED talk which will help get the message out.

    Please get in touch through....
    AndyPandy, actup and JaimeS like this.
  14. Keela Too

    Keela Too Sally Burch

    Hope 4 ME & Fibro NI are working on a demo for Belfast. More detail in time.
    JaimeS and mango like this.
  15. L.A. Cooper

    L.A. Cooper

    Yes, thus far we have (near-confirmed) protests in London, Cardiff, Manchester, Oxford, Bristol and Belfast (yippee!) but would ideally like another in Newcastle in conjunction with CMRC conference - perhaps a few speakers can join? It would be fantastic to see protest volunteers in Scotland as well.

    I'm very happy to lend a hand to anyone who needs it. The May #MillionsMissing was a huge hit, but it's crucial to see growth and development in our demonstrations!

    ukxmrv, Valentijn, mango and 8 others like this.
  16. Sasha

    Sasha Fine, thank you

    Last edited: Jul 14, 2016
    Valentijn, sarah darwins and JaimeS like this.

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