ME patient organisation end of year round up

ME patient organisation end of year round up

01.01.09

ME Association:

The response submitted to PULSE in relation to the Bass article on somatoform disorders has still not been published.

A copy of the MEA’s response can be found in the news section of the MEA website here:

http://www.meassociation.org.uk/content/view/735/70/

or here, on ME agenda:

https://meagenda.wordpress.com/2008/12/23/pulse-mea-responds-to-article-on-somatoform-disorders/

The only additional response that has been published by PULSE is from Belinda Rowland, 25 Dec 08, one time student nurse, currently NHS clerical:

http://www.pulsetoday.co.uk/story.asp?storycode=4121546

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Action for ME:

According to AfME’s e-newsletter: Keep Me Updated 3

“The Medical Research Council (MRC) has set up a multi-disciplinary panel* to try to entice new talent into the field.

“MRC-critics may scoff but the Chair, Professor Stephen Holgate*, has overseen significant progress in respiratory research and Boris Leszek, Chief Executive of the MRC, is taking a personal interest, so there is hope.

“Action for M.E.’s Sir Peter Spencer, who attended the group’s first meeting, alongside Dr Charles Shepherd of the MEA, said: “The meeting of minds has considerable potential for re-invigorating research into M.E. The emphasis is very clearly on biomedical scientific research.”

“A workshop will be held later next year, looking at how to engage scientists and new technology in investigations on the physiology of M.E. and to collect data to identify separate types of the illness which relate to genetic variations.”

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*Ed: Professor Stephen Holgate also chairs the CFS Research Foundation’s research committee.

** For a list of current members of the MRC’s “multi-disciplinary panel” obtained under FOI see:

https://meagenda.wordpress.com/2008/12/12/foi-request-mrc-cfsme-multi-disciplinary-panel-members-list/

A copy of the Terms of Reference for this new MRC group will be posted here when I have received this document from the MRC.

For a copy of AfME’s report on the inaugural meeting of the MRC’s “multi-disciplinary panel” see:

https://meagenda.wordpress.com/2008/12/19/mrc-multi-disciplinary-panel-expert-panel-inaugural-meeting/

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ME Alliance:

Action for ME’s Sir Peter Spencer has yet to provide a response to the following questions first raised with AfME and the ME Association on 20 November 2008:

To: ME Alliance: Heather.Walker@afme.org.uk ; peter.spencer@afme.org.uk ; charles.c.shepherd@btinternet.com ; tbritton02@yahoo.com

Re: Current status of the ME Alliance

It was understood that the existing ME Alliance was anticipated to be reconvening earlier this year.

I should be pleased if you could clarify the following:

1] Is the ME Alliance still extant?

2] Who are the current members of the ME Alliance?

3] Does the ME Alliance currently have a convener and who is the convener?

4] When did the last meeting of the ME Alliance take place and which organisation reps were present at that meeting?

5] Has a date for a future meeting of the ME Alliance been set and when is the next meeting anticipated to be held?

6] Does the current ME Alliance have a constitution, mission statement or statement of objectives and if so where can these be accessed?

7] Does the ME Alliance intend to publish an agenda, minute, note or summary of any meetings it might hold in the future?

There has been much speculation amongst the ME community about whether the meetings being held by the Countess of Mar are a “new Alliance” or a “Reformed Alliance” which has replaced the “old Alliance”.

Given that very little information about the existing ME Alliance has been issued over the last couple of years since the departure from Action for ME of Chris Clark, and given the evident confusion about the current status of the ME Alliance it would be appropriate for a statement to be issued clarifying the situation and responses provided to the queries raised above.

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It is now six weeks since these questions about the existing Alliance were first raised with AfME and the MEA.

Heather Walker of AfME has identified Sir Peter Spencer as the person within AfME authorised to respond to queries in relation to the existing ME Alliance; I have received no response at all from the ME Association on these matters.

A futher request for clarification of the status of the existing ME Alliance will be sent, today, to Sir Peter and to the ME Association.   It is beginning to look as though the status of the existing ME Alliance is an issue about which neither AfME nor the ME Association is prepared to be transparent.

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APPG on ME:

The next meeting of the All Party Parliamentary Group on ME is provisional for February ’09.  The Minutes of the October ’08 meeting can be read here on ME agenda:

https://meagenda.wordpress.com/2008/12/15/appg-on-me-minutes-of-meeting-8-october-2008/

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Proposed APPG on ME Inquiry into NHS service provision for people with ME:

The ME Association and Action for ME provide joint secretariat function for the APPG on ME and both organisations were involved in the drawing up of the draft Terms of Reference. There had been considerable concerns over the inquiry’s draft Terms of Reference and around the APPG’s lack of proper consultation other than with AfME and the MEA over both the Terms of Reference and the scope and objectives of the proposed inquiry, in general.

According to the Minutes of the October APPG, Dr Turner had said:

“…the APPG Inquiry into NHS Services would look at what NHS services were available and make recommendations. It would consider whether there was a need for a national service framework for ME.”

and

“…like the Gibson Inquiry into research, the Inquiry would invite written evidence from people with ME/CFS and those involved with providing NHS services and, having considered the written evidence, it would then invite a number of people to give oral evidence. Ciaran Farrell asked if individuals would be allowed to submit their experiences and views. The Chair said they would be invited to submit written evidence in the first instance.”

But no deadlines for submissions of Written Evidence have been announced by the APPG and neither have any dates for hearings for oral evidence.  The final Terms of Reference have yet to be published and so remains unknown what amendments have been made to the draft document or whether the APPG has taken any heed of the concerns that were submitted, in November.

Dr Charles Shepherd, MEA, has since said that the most important source of evidence will be that sent in by people with ME/CFS who have used hospital based services and that he hopes there will be a large response when the Inquiry calls for patient evidence which he says will probably, in part, take the form of a questionnaire.

But no patient questionnaire has been issued.

Those who have been able to use “hospital based services” are less likely to include the moderate to severe and severely affected – unless domiciliary services are also being provided for those patients too ill to travel to clinics.

How will the panel set about ensuring that its inquiry is inclusive of the views, opinions and experiences of the moderate to severe and severely affected and that any recommendations the panel makes in any report resulting out of its inquiry reflects the needs of the moderate to severe, and severely affected?

On the matter of funding for this unofficial inquiry, it had been stated at the October APPG that:

“…resourcing the Inquiry was an issue as a great deal of work would be involved. A similar Inquiry, resourced by a special interest group, had recently cost £40k. Suggestions to raise money included issuing an appeal for funds or approaching a pharmaceutical company for sponsorship. Ciaran Farrell cautioned against this, as a pharmaceutical company might compromise independence. The Chair said he would ensure that sponsors would not influence outcomes.”

On the matter of timescales, it had been stated that:

“The Chair would send out an invitation to submit written evidence before Christmas with a view to hearing oral evidence in February/March and publication before the summer recess (subject to funding).”

No invitation to submit written evidence was issued before Christmas.

Given the (as yet unresolved) issues around the draft Terms of Reference, given the scope of this project, the lack of resources (both admin and funding for the project), current uncertainties over who is going to be responsible for collection and processing of data and uncertainties over other processes through which this proposed project is going to be undertaken, it seems very unlikely to me that this project can be properly and proficiently resourced, undertaken and completed before the summer recess.

The next APPG on ME meeting isn’t scheduled until February. I will post any updates on the progress of this proposed inquiry as they are issued.

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Invest in ME:

Invest in ME’s December e-newsletter is now available to download as a PDF here:

http://www.investinme.org/IIME%20newsletter.htm

or as a webpage here:

http://www.investinme.org/IIME%20Newsletter%20Dec%2008.htm

Invest in ME Newsletter – December 2008 Nr. 08/12

IN THIS ISSUE
Lynn Gilderdale
Invest in ME International ME/CFS Conference 2009 News
Norway Establishes ME Centre
Dr Martin Lerner’s EIPS
Quick Topics
UK MRC Panel
Christmas ideas for ME

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