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UK All Party Parliamentary Group being reactivated - 2020

Discussion in 'Advocacy Action Alerts' started by NelliePledge, Jan 9, 2020.

  1. Sarah94

    Sarah94 Senior Member (Voting Rights)

    Does anyone recognise any of the MP's in the photo?
    MEMarge, Esther12, Dolphin and 2 others like this.
  2. JoanneS

    JoanneS Established Member (Voting Rights)

    I recognise Ben Lake (Plaid Cymru - Ceredigion) and Kerry Mcarthy (Labour - Bristol East). Both were involved in previous debates (Westminster Hall and Common's)
  3. Dolphin

    Dolphin Senior Member (Voting Rights)

    This was posted to a list I'm on, in case it is of interest to anyone:

    Sean, JohnTheJack, Barry and 3 others like this.
  4. Wits_End

    Wits_End Senior Member (Voting Rights)

    UK London
    Why do I just get "Loading Tweet" when other people can clearly see things, does anyone know?
  5. rvallee

    rvallee Senior Member (Voting Rights)

    Probably an ad blocker or a similar browser extension.

    I had the same problem with Facebook embeds and needed to deactivate uBlock origin to see them.
    ahimsa likes this.
  6. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

    I agree with the names Jo gave above.
    Also someone on Twitter said their MP attended - Margaret Greenwood (seated next to Dr Charles Shepherd), Labour Wirral West.
    I also recognise both gents, standing, at each end of the line....haven’t quite worked out who they are yet though.
    Sarah94 and ladycatlover like this.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    ME 6.jpg

    Rt Hon Robert Goodwill MP joined APPG to support people suffering from ME
    MEMarge, JohnTheJack, Amw66 and 6 others like this.
  8. Cinders66

    Cinders66 Senior Member (Voting Rights)

    It’s extremely interesting to read thanks. I was far less involved in things back then, although already very severely affected and it’s actually depressing to read about the enthusiasm and seeming dynamic agenda then with real hope that was sadly unrealised. Then there was with the emergence of the CMO report, new funds for specialist services and the MRCresearch strategy of 2002-3 and a highlight notice being issued (sound familiar). tony Wright - I remember him as being a champion - was saying the CMO report must be the beginning not the end but then, after 2006 It seems largely “it” for progrsss until this slight reflowering of life present time . There was also a Pdf of the APPG minutes where Tony wright welcomes new MPs after an election and stated that there were 100 MPs and Lords as members, which was seen to be encouraging, that was pre 2005 I think.

    In fact it triggered de ja vu , I was having a [civil] disagreement about MRC cfs strategy and funds with Dr Charles Shepherd on Their Facebook a couple of weeks ago and he highlighted to me the MRC highlight notice as a “positive step” they were taking when justifying them not putting in ring-fenced money I always call for, I replied that it was a lame gesture that had achieved nothing the many years it had sat there and now reading this I discover I’m not alone in this view because The APPG review of the period 2005-10 was saying THEN that the MRC highlight notice hadn’t worked and another initiative was needed, yet here we still are with just a couple (potentially) of funding lots over 2 decades. I’m sure most of us who’ve written to the MRC will have received the standard “we welcome applications’ , “don’t usually RFF” and “we have issued a highlight notice” response I do, but how many realise a highlight notice was tried in the first decade of the century too and didn’t work then either so not much of an effective strategy in place with the conference not stimulating interest either, 2 decades after the first mrc strategy was written in response to the 2002 cmo report. The progress wholly expectedAnd needed wasn’t the progress gained.
    Last edited: Jan 24, 2020
    Hutan, Invisible Woman, MeSci and 2 others like this.
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    think this might be another participant of the APPG
    Jonathan Reynolds, MP for Stalybridge
    Hutan, MEMarge, Trish and 3 others like this.
  10. daftasabrush

    daftasabrush Senior Member (Voting Rights)

    Any info on charities involved? Besides ME Association and possibly ME Action.

    Was the Countess of Mar there, or anyone else from the House of Lords?
  11. Cinders66

    Cinders66 Senior Member (Voting Rights)


    I hope that the APPG doesn’t confine itself to just these matters. I note the need for resources for autism mentioned but not for m.e. I saw Action for MEs material for this was literally just asking for support. My fear is the main charities won’t encourage the APPG to challenge or criticise the establishment that the charities prefer to “work with”.
    Last edited: Feb 15, 2020
  12. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Apparently no one from HoL but minutes are still awaited on.
    On Facebook an enquiry was made regarding APPG minutes and next meeting and we were told more Info Friday (gone) or Monday.

    Olivia Blake is one officer, A young Labour MP.

    I didn’t get impression AFME attending. Looks like MEa possibly #Meaction only

    edit Dr Charles Shepherd said information coming this week including on the next APPG meeting which will be March now and apparently focused on research issues. I don’t know whether this will be before or after the March announcement on funding for the gwas study
    Last edited: Feb 17, 2020
    ukxmrv likes this.
  13. Cinders66

    Cinders66 Senior Member (Voting Rights)

    Re past APPGs stance & activity on research period 2000-2010. The bits that stood out for me from their minutes and reports were:
    my bold. I fully agree with what Chris Clark said then and for the largely unmoved situation now and think it’s unfortunate that these principles it seemingly appears didn’t persist after the departure of Chris Clark around this time (I’ve only heard negative stuff about him previously, was he involved in the PACE trial & Action for ME?) but here I fully agree.

    I agree with all this and have just bolded it for easy reading

    This was from around 2007-8 but from the minutes I don’t think it Was ever used unfortunately because there was apparently controversy around the wording. What I like was the assertive radicalism

    I’m posting this to inform the debate about what type of thing we want the APPG to call for regarding research this time around, and perhaps this time we can make it happen. I’m Personally unhappy that the highlight notice fig leaf is still in use whilst real pressure on either the government or mrc to be more proactive afaic hasn’t been applied, it will be interesting to see the 2020 agenda but sad so many of us from the previous era are still waiting for the resources and research to find treatments.
    Last edited: Feb 17, 2020
    rvallee and MEMarge like this.
  14. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    On Lords involvement Nicky Morgan has left the government so maybe will be able to get back involved with ME through this group. Her connections within the government party would be of use.
    Invisible Woman and MEMarge like this.
  15. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)


    Note that any charity reps involved in this recently inaugurated group will not be members of the APPG on ME, themselves, although APPG groups are permitted to use reps from organisations for secretariat duties. For the previous APPG on ME, the ME Association and AfME had shared the role of Secretariat.

    There is no up to date register available yet - so we cannot see who the Officers and Members are.


    When the new group has been listed on the Register, it should list the names of the Chair and other Office Holders. The Register used to also list the names and of the 20 "Qualifying Members". It's unclear whether APPGs still require 20 "Qualifying Members".

    "The Register is published on the parliamentary website and updated approximately every six weeks."


    Guide to the Rules on APPGs

    The Guide to the Rules on APPGs explains the rules that APPGs must comply with. These are mostly about the membership, meetings, publications and finances of APPGs.

    Below are links to the current edition of the Guide in two different formats:

    Extract from Guide to the Rules on APPGs:

    Admitting members and electing officers

    18. Groups must observe the following rules about membership:

    a. Groups must be open to all Members of both Houses;
    b. Groups may charge parliamentarians an annual subscription;
    c. All parliamentarians may vote at any meeting of the group;
    d. Groups may include non-parliamentarians as external members, and may charge them a subscription or membership fee, but they must not have voting rights. See also paragraph 21 on maintaining a list of current members of the group.

    19. Officers must be elected as follows:

    a. The group must have at least four officers;
    b. Each of the group’s officers must be either an MP or Peer and must be elected at a General Meeting of the group (see paragraph 20(c) to (f));
    c. At least two of the group’s officers (including the Chair, who must also be the group’s Registered Contact), must be MPs;
    d. At least one officer must be from the government party or parties and at least one from the main opposition party;
    e. Groups may appoint Peers to any position (including co-chair) - except for that of Chair and Registered Contact.


    I'm afraid getting copies of timely minutes or summaries of APPG in ME meetings has been an issue in the past.

    I assume this group has been constituted as a group that does not permit members of the public to attend meetings. (The last group had been open to the public, but when former MP, Annette Brooke took over as Chair, after a summer recess, it was announced that the meetings would no longer be open to the public. It was understood to be the COM and Denis Turner and possibly Dr Shepherd who had led the decision not to admit members of the public to the APPG on ME meetings after that summer recess.)
    Invisible Woman and MEMarge like this.
  16. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)


    Having been around at the time, that was a very poorly conducted and unofficial "inquiry" - cobbled together by Ian Gibson via an ad hoc group chaired by himself after he had failed to obtain the "full" and "high level" and "official inquiry" he had promised in the media and to local group reps. The "Gibson Report" published by the GSRME is dreadfully written and was published with typos and factual errors and includes some pretty dodgy statements. For analysis of selected of its content see:


    More thoughts on the Gibson Report by Angela Kennedy
    August 28, 2009

    (The Twenty-six soldiers of lead platform was an extension site to my old ME agenda site.)
    Invisible Woman, MEMarge and rvallee like this.
  17. Cinders66

    Cinders66 Senior Member (Voting Rights)

    I haven’t read the full report so can’t comment on the details but if that was the best he could do, afaic it still had weight as an inquiry and some assessment of the unsatisfactory situation and I agree with the funding calls it made as part of its conclusion, as I agree with his EDM in full. I understand from the APPG notes that there was criticism at the time for it calling for equivalence of funds with BPS levels (of several million by then) Rather than total switch, but even equivalence in terms of financial value, would have been nice.
    JemPD likes this.
  18. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)


    This uncommissioned and unofficial "inquiry" and the Report that resulted out of it had no status at all in either the H of Commons or the H of Lords, or with any government agency. It was sent to various government agencies, none of whom issued any response.

    I know of no-one around at the time who was prepared to provide a copy to anyone, be it their MP, GP or whatever. After it was published, it pretty much sank without trace.

    From my ME agenda website:


    June 22, 2007


    A summary of the key issues discussed at The ME Association Board of Trustees meeting held on 16 June 2007 can be read here

    The summary contains a reference to Dr Ian Gibson, MP’s proposed launching of an Early Day Motion (EDM) based on the Report of the Group on Scientific Research into ME. Dr Gibson had chaired the committee which had undertaken to carry out this unofficial “inquiry” and to publish this unofficial document, known colloquially, as the Gibson Report. The GSRME disbanded in May as half the committee had lost interest in attending meetings and in taking the project forward.

    Dr Gibson had suspended a proposed multi-clause EDM in March, stating that he was not prepared to submit an EDM which, he claimed, might be subject to ‘a counter-campaign’. In fact, the concerns were that the GSRME had failed to properly consult over the content of this EDM and that the EDM would be calling on MPs to welcome (and thereby endorse) a flawed report.

    Now that the GSRME committee has disbanded, none of the factual inaccuracies, omissions and ambiguities contained within this document can be corrected and the document remains unfit for purpose, despite calls from the ME charities, campaigning groups and individuals that the GSRME should make amendments to its report.

    Since the GSRME committee can no longer function, the Gibson Office has suggested that responsibility for any EDM based on its report should now devolve to the APPG on ME.

    According to Dr Charles Shepherd (who compiles these informal summaries of the Association’s board meetings): ‘It seems likely that the Early Day Motion (EDM) that was drafted by Dr Ian Gibson will now be taken forward by the APPG – possible content of a revised version, including reference to the NICE guideline on ME/CFS, will be discussed at the next APPG meeting in July.’

    It is expected, then, that discussion of a further revision might be listed on the Agenda for the July meeting of the APPG but since the Agenda is likely to be a very full one and given that the July meeting is also the group’s AGM, it doesn’t seem very likely that there is going to be very much time to spare for discussing this issue.

    The ME community has still not been consulted about the content and wording of any EDM which might now be laid down by the APPG. Nor has any means by which any form of consultation and discussion might take place been mooted, other than amongst those attending these very time-pressed APPG meetings, or how any decision might be arrived at via the APPG. Once again, the ME community has been marginalised from having an input into what this EDM should actually call for.

    It is worth noting that neither of the versions proposed to date include the term WHO ICD-10 G93.3 or call for the adoption and implementation of the Canadian Guidelines, per se.

    At the APPG meeting scheduled for July, will Dr Shepherd bring with him a revised version of an EDM, complete with reference to the NICE guidelines and attempt to get this rubber-stamped by the APPG or does the APPG intend to carry out some form of wider consultation and if so, how will it set about this?

    For the record:

    Version One: The version of the EDM as it stood at the APPG on ME meeting on 22 February [2007] and as published on 14 April [2007] by the MEA, in the March/April [2007] issue of ME Essential magazine:

    This House recognises myalgic encephalomyelitis (ME) as a serious, long term, debilitating illness, that affects more people in the UK than HIV/AIDS;
    welcomes the Group on Scientific Research into ME’s Report ‘Inquiry into the status of CFS/M.E and research into causes and treatment’;
    notes the Department of Health classification of ME as a neurological condition;
    calls on all government departments to accept this definition;
    calls for the implementation of internationally recognised clinical and research criteria which reflect the Department of Health classification, similar to the guidelines used in Canada;
    calls for the collation of national epidemiological data of ME patients based on this criteria;
    calls for an independent panel of medical experts to review the existing international and UK biomedical evidence relating to ME to identify areas for further research;
    calls for massive further research into potential aetiology and treatments of ME.

    Version Two: The revised version of the EDM as it stood at 6 March [2007] and at the point at which it was suspended by Dr Gibson:

    That this House recognises Myalgic Encephalomyelitis (M.E.) as a serious, long-term, debilitating illness, that affects more people in the UK than HIV/AIDS;
    welcomes the Group of Scientific Research into ME’s Report “Inquiry into the status of CFS/M.E. and research into causes and treatment’;
    notes the World Health Organisation classification of M.E. as a neurological condition/disorder;
    calls on all government departments to accept the WHO classification;
    calls for the implementation of international recognised clinical and research criteria, consistent with the Canadian Guidelines, which reflect the WHO classification;
    calls for the collation of national epidemiological data of M.E, patients based on this criteria;
    calls for an independent panel of medical experts to review the existing international and UK biomedical evidence relating to ME to identify areas for further research;
    and calls for a properly funded and co-ordinated research programme into the potential causes and treatments of ME.​
    Last edited: Feb 17, 2020
    Invisible Woman and rvallee like this.
  19. rvallee

    rvallee Senior Member (Voting Rights)

    Every single point made over a decade ago still applies today, exactly as is, in some cases things have actually gotten worse. And every single one of those points was equally true 2 decades ago, 3 decades and so on. In that last time interval money was invested but most of it was meant to hurt us, to eliminate us from existence, not actually help us.

    I'm not even sure if there's a comparable anywhere else in the academic professions, of not only complete stagnation but actual regress that is actually, somehow, presented as a success of sorts. In almost any other profession this kind of stagnation simply does not exist, is not even feasible because the costs of stagnation are evident. Especially with the recipients of this failure saying loudly and consistently that it is failure and with actual numbers that in that time span add up to significantly more than a trillion in lost economic opportunity and millions of lives wasted.

    Yet asking medical authorities none are even aware of any of those facts, we're all just tired and the motivation is actually to make everything worse off with time. The same arguments have to be made decade after decade, exactly as is, with the same nonsensical answers that have nothing to do with the actual issues.
    Invisible Woman, JemPD and Cinders66 like this.
  20. FMMM1

    FMMM1 Senior Member (Voting Rights)

    I have negative memories of the previous APPG on ME. I recall asking them to request the Government Research laboratories [https://www.fera.co.uk/] review proteomics studies etc. to see if they could develop biomarkers [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044169/]. I was told, by the the APPG Secretariate (Action for ME) that requesting a review of research was outside the APPG's remit.

    Interesting to see if this iteration of the APPG are more effective e.g. by lobbying for Simon Pointing's GWAS application.

    Does anyone know what their remit is/powers are - aside from existing?

    @Simon M @Michiel Tack @Giada Da Ros @EspeMor
    Invisible Woman and JohnM like this.

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