Brief Report on APPG on ME Meeting 2014
Brief Report on APPG on ME Meeting 2013
Brief Report on APPG on ME Meeting 2012
Brief Report on APPG on ME Meeting 2011
Brief Report on APPG on ME Meetings 2009
Brief Report On APPG - Oct 2008
Brief Report On APPG - Jan 2008
Brief Report on APPG Meeting
Brief report on APPG Meeting Feb 2007
Scottish Parliamentary Business in ME - to July 2010
The Lothian Clinic : a cautionary tale from Tymes Trust
There is a saying 'be careful what you wish for'. Many local ME groups have assisted with
setting up services in their area. Many became disillusioned as the services they ended up with
were not specialist ME clinics, as requested, but fatigue clinics offering CBT and GET, with no
ME-expert clinician. Yet their involvement was seen as a kind of endorsement, demonstrating
patient consultation in the process.
Tymes Trust Scotland Representative Lesley Scott has, through Freedom of Information
requests, tracked the timeline for the setting up of the Lothian clinic. We are making this
public so that groups considering becoming involved in such a process can see who took part,
what happened as a result, and learn from it. Note: at no time were meetings of the Cross Party
Group (CPG), which was running concurrently, informed of what was going on.
It's All About M.E. - May 2011
Cross Party Group on M.E. Reception to mark M.E. Awareness Week 2012
Tuesday 8th May, 6-8pm, Garden Lobby, Scottish Parliament
The event will bring together MSPs, healthcare professionals and people living with M.E, to share knowledge and information. We will open with short presentations from members of the Cross Party Group, Jo Bluett and Dr. Gregor Purdie who will speak about their own experiences of M.E., Jo from a sufferer's point of view and Gregor from that of a health professional.
We will have the documentary 'Voices from the Shadows' running on plasma screens. This compassionate and moving exposé bears witness to the tragic consequences of psychiatric prejudice and medical ignorance concerning one of the most prevalent illnesses of the 21st century. Firsthand accounts from patients, carers, and medical experts paint a shockingly confused state of affairs—and underscore the urgency and frustration around this issue which is something all our MSPs must grasp.
There will be a variety of displays and lots of information supplied by CPG member groups and supporters including edmesh, MERUK, 25% M.E. Group, Afme and M.E. Association to name but a few.
We are delighted to have Perth and Kinross council presenting the 'Virtual Learning Experience' through GLOW, cutting edge technology currently being developed, which offers children/young people with M.E. the means to break down barriers to accessing education.
The reception will be an informal one, with the emphasis on raising MSP awareness of M.E. across all parties. Our aim is to garner understanding and support for the work of the CPG on M.E. so that impact will spread both locally and nationally to address the issues that matter most to people living with M.E. in Scotland.
See attached invite and feel free to pass it on among your networks as appropriate and RSVP to me by Friday 20th April
Cross Party Group on M.E.
Tel. 0131 667 8527
Scottish Cross Party Group Minutes
Minutes on Cross Party Website
MSP's Track Record in ME - prior to last election (2010)
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WINTER 2012 UPDATE
Cross Party Group on M.E.
Since the last edition of the quarterly there has been a further – and what proved to be final – meeting of the Cross Party Group on ME at the Scottish Parliament. After over ten years of effort on various fronts over the course of three Parliaments, friends made, and bonds developed, this is both a sad and - in view of the circumstances around closure - we regret to say a welcome development.
At a CPG meeting on September 19th 2012 the Cross Party Group on ME was asked to vote on whether to be a Cross Party Group on ME or a Cross Party Group on ME and range of fatiguing disorders. This vote took place at the behest at of the convener and under threat of her resignation if the vote went in favour of ME.
The choice put before the Cross Party Group on ME was:
To focus our endeavours on the WHO ICD10 G93.3 neurological disease ME or instead, choose to proceed under the umbrella term ME-CFS to include a spectrum of fatiguing conditions?
These options stemmed from a sub group meeting at which the convener Mary Fee MP had been present. We understand that at this meeting the convener was unsympathetic to the view that the Cross Party Group on ME should be pressing for the establishment of a Centre of Excellence that would clearly and specifically focus on M.E. It had emerged that the sub group was divided on this point, with Lesley Scott, (TYMES Trust) Jane Giakoumakis (Lanarkshire ME Support), and Margaret Williams (ME East Kilbride) keen to see the CPG pressing for a Centre of Excellence on ME. Rather than take this specific matter to the full CPG for consideration, the convener attended the next sub group meeting. When the impasse remained she remitted Lesley to present a basis for the CPG to vote - not on this specific issue but on the Cross Party Group’s remit -reflecting the discussion at the sub group.
Lesley's Scott's paper with the above voting options was circulated nine days in advance of the meeting. The CPG secretary had been led to anticipate that a paper by the convener would also be circulated. This has never materialised.
At the CPG meeting the vote was introduced by the Convener as originating from a view on the part of some members that no one with a CFS diagnosis should be represented by the CPG on M.E. I for one felt my jaw just about hit the table at this point. Clearly Mary Fee had a very poor grasp of the situation. However she did not propose any discussion, rather the reverse, and on we went with the vote.
The vote went resoundingly in favour of M.E. Just four votes were cast in favour of the ‘spectrum of fatiguing conditions’ option. It is notable that the convener subsequently communicated that this option “would appear to broadly follow the existing remit of the group” [message to Lesley Scott]. This came as a surprise to all of us who had always assumed that a Cross Party Group on M.E. meant just that.
Sad to say that neither of the two major national ME charities supported the ME option at the meeting, choosing to abstain on the vote. Neither did MERUK stand up for ME.
Nonetheless votes for the group to continue as a CPG on ME outweighed the votes for the ‘fatiguing disorders’ option and abstentions combined. Curiously the majority, who did stand up for ME and against the fatigue lobby – including the 25% ME Group, the TYMES Trust, and many local support group representatives - have since variously been described in as a ‘faction’ and ‘certain individuals’.
Lesley Scott of the TYMES Trust in Scotland was close to the action throughout. She has commented eloquently on the emerging scenario regarding MSPs perspectives:
The MSPs are indeed very frustrated with us, but why are they frustrated? It is a frustration that is wholly fed on the fact that we will not compromise on ME being a neurological disease and accept it as part of a fatiguing spectrum, thus allowing the ‘progress’ they so desperately want at the expense of patient care.
The crashing irony is that this same CPG meeting had just been provided with feedback from the working group on GP education. The situation is hair curling: ME is occasionally mentioned in the curricula of the medical schools in Scotland, but always in the same breath as chronic fatigue syndrome, which in turn is viewed as amounting to chronic fatigue due to somatisation - therefore a ‘somatic syndrome’/‘functional disorder’ etc etc… It could not have been clearer that the situation on the ground is dire: confusion reigns, much to the detriment of people with M.E.
Following the meeting many felt that the best thing in the circumstances would be if Mary Fee were to stand down as convener, as she had vowed to do if the vote went in favour of M.E. However Mrs Fee attempted to hang on and oversee a further (unspecified) vote. In the event her failure to adhere to the outcome of the vote was referred by a group of concerned CPG members to the Standards Committee, following which she and the vice conveners resigned.
We have since been treated to the eulogising of Mary Fee as an MSP who was exemplary in fostering co-operation. This is extremely hard to take in the circumstances. For example, Mary Fee had consistently turned a deaf ear to all attempts at communication from us, including an invitation from Simon Lawrence to visit the Troon office and hear about our work. If she had had the courtesy to engage then perhaps she would not have revealed such a lack of understanding of what our perspective actually is. We are similarly less than impressed by her record in responding to individual people with M.E
ED COMMENT: Several papers relating to the events at Cross Party Group are available on the 25% ME Group website.
The 25% ME Group would like to express sincere thanks to our Scottish Information Officer Carol Flack, who took on the role of secretary of the Cross Party Group at the beginning of the year and steered a highly competent and professional course throughout what proved to be a difficult period.
Carol is that rarity – a healthy person willing and available to work to secure the best for people with ME. However, she also has to earn a living! The 25% ME Group would love to be able to retain Carol’s services. But we need funds. If you might be interested in supporting us to employ Carol on time limited projects to the benefit of people with M.E. in Scotland then please contact Jane Giakoumakis on 01698-817114. Even a small monthly pledge for the period of a year could help us reach the target threshold where it becomes meaningful to engage Carol.
IiME to Circulate GP info packs
In a further irony, Invest in ME were to have attended the November meeting of the Cross Party Group on M.E., to speak about their sterling efforts to make a reality of a Centre of Excellence for biomedical research into M.E. Following the demise of the CPG Invest in M.E. has decided to make 25 copies of the IiME GP information pack available for Scotland. The idea is to help the situation in Scotland as best they can and that education is the best way to progress and improve the way people with ME and their families are treated.
Relating to the Cross Party Group on M.E. at the Scottish Parliament
25% ME Group to CPG on M.E. Sept 2012 – Why M.E.?
This was circulated to members of the Cross Party Group on M.E. at the Scottish Parliament on behalf of the 25% ME Group prior to the September 2012 meeting, when a vote on whether or not to continue to be a Cross Party Group on M.E. was held.
Open Letter to Standards Committee Sept 2012 re CPG on M.E.
This letter concerns the vote taken at CPG’s September meeting - which overwhelmingly voted in favour of continuing to operate as a CPG on M.E. - and the Conveners’ reaction to this vote.
Background Briefing to Standards Committee re CPG on M.E.
This accompanied the above letter, and sets out how the CPG on M.E. came to be reconvened following the May 2011 Scottish Parliamentary election and highlights the fact that this was consistently presented as a CPG on M.E. The briefing was put together by three people who had been directly involved in the decision to reconvene the Group, including Helen Brownlie of the 25% ME Group.
The end of the Cross Party Group on ME : by Tymes Trust
The Young ME Sufferers Trust (Tymes Trust) values its reputation. In the aftermath of
the demise of the Cross Party Group on ME in the Scottish Parliament, EdMesh
published a version of the events which in our view misrepresented not only the facts
but also the actions of the Trust. They granted the Trust a right of reply to put the
record straight but then withdrew it.
ME SCOTLAND WINTER UPDATE 2012
25% ME GROUP Member Feedback Report (2012)
Coverage includes: experiences of the NHS and what we can learn from them; what works best for you; meeting personal care needs; obtaining medical evidence for access to disability benefits; your illness – origins, course & severity
To get this used as we would wish I think it has to be featured elsewhere on the website also, at the page on Group Publications.
As well as the full report it should be possible to download the 4 separate stand alone reports:
- Your illness & best management
- Medical evidence for benefits
- Meeting Care Needs
Scottish Health Care Needs Assessment
Update September 2010
WINTER UPDATE 2012
Following the presentation to Welsh Assembly Members in March, arranged via Assembly Member Julie Morgan, as reported in the previous issue of The Quarterly, another meeting is to be arranged between ME Support in Glamorgan (MESIG) and Julie Morgan in New Year to identify next steps. Meanwhile MESIG have been allocated £5000 in Lottery funding to raise awareness. The intention is to produce info packs/business cards/ banners etc.that can be used in a variety of ways to raise awareness, including through presentations.
Our thanks to Chris Constantinou for providing this update
ME WALES SUMMER UPDATE 2012
M.E. Matters in Northern Ireland
Historically ME matters in Northern Ireland have been underrepresented in the Quarterly. We hope this article will mark the start of a change, with a brief overview of the main news items from the last year.
Questions in the NI Assembly
Questions on ME have recently been raised with the Minister of Health, Social Services and Public Safety by two NI Assembly members.Firstly, back in March Mr Spratt asked the Minister what treatments and services are available to people with Myalgic Encephalomyelitis, and whether he has any plans to expand the treatments and services . The ministerial reply was:
The variability of symptoms in patients with ME/CFS mean that they will need to access different parts of the health service, depending on their specific symptoms and the severity of their condition. The focus of treatment in Northern Ireland is therefore centred on close co-operation between patients, carers and the relevant health and social care professionals, which is essential for ensuring that sufferers obtain the most suitable treatment for their needs.
In Northern Ireland treatment, for the most part, is provided by general practitioners; however patients have access to a wide range of treatment and support services in primary, secondary and community care settings, including specialist medical, neurology and mental health services, depending on their individual needs. Any proposals for new service developments or allocation of resources is a matter for the Health and Social Care Board (HSCB), as commissioner of services, to consider.
To date HSCB the has established a commissioning team which will deal with, amongst other things, ME/CFS. I am aware that this team has already met with a number of ME/CFS service user representatives and discussed possible areas for service improvement.[WA 451 30 Mar 2012]
In May 2012 Mr Easton asked the Minister what services are available for people with ME in the North Down area. The ministerial reply repeated the first paragraph of above, continuing:
Whilst the South Eastern Health and Social Care Trust, covering the North Down area, does not have a specialist ME service, patients may be seen by consultants and referred on to the Belfast Trust or back to GPs, with a treatment plan which may include referral to psychology services in primary care for cognitive behavioural therapy.[WA 324, 11th May 2012]
Members of Newry and Mourne ME/FMS Support Group were honoured with a civic reception given by the Lord Mayor of Newry on February 20.
Talk by Dr Enlander in Belfast
New York-based physician Dr Derek Enlander spoke at the Lansdowne Court Hotel Belfast on 1st March. Dr Enlander was born in Co Tyrone and trained in Belfast. Dr Enlander’s clinic 'specialises in research and treatment of Chronic Fatigue Syndrome and Fibromyalgia'. He discussed his long experience with ME/CFS patients.
Other contributors included South Down MLA Jim Wells. Mr Wells is also Deputy Chairman of the Health Committee at the NI Assembly and Northern Ireland Health Minister.
The meeting concluded with a question and answer session, chaired by Dr William Weir, a London-based consultant in infectious diseases.
International Conference in Newry
The Newry & Mourne ME & FM Support Group held a major
International Conference on 11 Nov 2012.
Dr Derek Enlander, speaking about a new ME/CFS Center at the Mount Sinai Medical Center, New York. He reported findings on a Post Exertion Study
and its relationship to GET .
Dr Charles Shepherd ME Association UK, on the
trails and tribulations of diagnosing and treating ME in the UK.
Dr Judy Mikovits on the aftermath of the XMRV publications
Dr Kenny De Meirleir reporting on progress with Gc protein macrophage activation factor (GcMAF) treatment.
NOTE: GcMAF treatment is a promising new development, relating to the immune response in patients. We hope to cover this in more detail in the next issue of the Quarterly.
ME Alliance Northern Ireland (MEANI)
A new alliance for people with ME/CFS in Northern Ireland was formed earlier this year. ME Alliance Northern Ireland (MEANI) comprises representatives of several local groups: Newry and Mourne, Belfast, Mid-Ulster, Mid-Down, Portadown/Armagh and Dungannon. (see back cover)
M.E. in N. Ireland - 2012
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