Concerning Ryan Baldwin: Please send a card

Please send a card to Ryan

 

References:

Ryan Baldwin – Child in Crisis
Help ME Circle, 8 April 2009

Contact info Ryan Baldwin – Child in Crisis
Help ME Circle, 8 April 2009

Ryan Baldwin Letter
Help ME Circle, 8 April 2009

http://www.co-cure.org/Baldwin.pdf

HELP – Ryan Baldwin
Help ME Circle, 9 April 2009

 

By Pat Fero  |  30 April 2009

Hello,

Information about Ryan Baldwin, a 16 yr old North Carolina kid in foster care 90 days, has been posted on lists internationally. If you need background, please e mail me back or look in list archives.

The Baldwin family had 3 days in court this week. Here is a brief summary.

Dr. Paul Cheney testified on Monday, April 27. In his usual eloquent style, he was well prepared for questions, and went way beyond the court’s knowledge of CFS, POTS and the heart condition of this particular kid.

My understanding is that Dr. Cheney thought that Ryan should not be climbing stairs several times a day to eat or to go outside and that Ryan definitely needs his power wheel chair.

Tuesday, the Department of Social Services (DSS) called Lisa to the stand. She had prepared a timeline for years of medical issues, appointments, medications and so on, so she said she was able to stay on track with the questions.

That same day, the parents were sequestered with audio and video camera so they could watch Ryan testify. Lisa tells me that he faced the camera, was calm and answered the questions without a negative or hostile attitude.

Lisa tells me it appeared that their attorney fashioned questions after Dr. Cheney’s responses. Lisa told me over and over that said she and her husband, Rodney were so proud of their Ryan! They were allowed to see him for 15 minutes at the end of the day, but not allowed to ask him medical questions or anything about the foster home.

Wednesday, several doctors testified. The DSS social worker was on the stand in the afternoon. Lisa tells me that the social worker could not answer specifics on many questions, but Lisa’s atty produced the documents to help her remember.

Lisa thought that the Judge might make a decision yesterday. However, he called a recess, asked both attorneys into chambers, and when he came out, the court dismissed until MAY 18th.

17 – 18 more days with no information and no social contact is a long time for a 16 year old kid. It is not like he has TV or computer use even to complete school work. His grandfather did get him a short wave radio. Ryan told the court that he loves to fool with it.

As a community we understand isolation. Ryan does not get mail, so how about we all send him a “Thinking of you card” or “Cheers”, “Good Luck” something general like that. You could make a card from a cartoon or paste a picture, use a card you have, whatever you want. The cost is a stamp.

If you are not in US, you might sign several names onto a card and mail as one. I am thinking about how a teenage would feel should a bag of mail appear at the foster home which is fairly isolated in the mountains in North Carolina. It could be very fun for him. And a stamp from Belgium or Japan? Kids love that kind of thing.

I asked Lisa how Ryan gets mail. It all has to go through social services. Please, Please send a card to Ryan at the address listed below. Don’t forget to sign your name inside with the place where you live in case he loses the envelopes. My understanding is that no one is allowed to ask him how he is feeling physically or mentally. I have no  idea if the DSS will open mail.

Ryan Campaign

LASTLY, please forward this note to any lists, friends, anywhere on the planet and feel free to shorten as you wish. The bottom line is to get a mail bag of cards to Ryan within the next week or so to help him know that he is not alone.

Thank you,

Pat Fero
Wisconsin

Posted in ME in children, MSBP (FII), Ryan Baldwin. Comments Off

Kathleen (Kay) Gilderdale court appearance

freefoto
Postings on ME agenda site for media coverage of the death of Lynn Gilderdale are identified by the Freefoto.com image above and are archived in Categories under Gilderdale Case

**************************************************************

Kathleen (Kay) Gilderdale case: Media coverage 30 April 2009.  Additional coverage will be added to the top of this page.

 
BBC News  |  30 April 2009


http://news.bbc.co.uk/1/hi/england/sussex/8026607.stm

Mother in court in ME death case

———————–

Times online  |  30 April 2009  | Steve Bird


http://www.timesonline.co.uk/tol/news/uk/crime/article6198314.ece

Kay Gilderdale in court over death of ME sufferer daughter, Lynn

———————–

(Ed: Note URL says “pleads guilty” but no reports have reported a plea.)

This is Sussex  |  30 April 2009


http://www.thisissussex.co.uk/news/Mother-pleads-guilty-attempting-kill-daughter/article-952382-detail/article.html

Stonegate mother in court on attempted murder charge

————————

Sussex Argos  |  30 April 2009


http://www.theargus.co.uk/news/4332219.Sussex_mother_in_court_over_ME_sufferer_daughter_s_death/

Sussex mother Kay Gilderdale in court over ME sufferer daughter’s death

Latest on APPG on ME inquiry into NHS services

Update: Jane Colby, The Young ME Sufferers Trust, advises that the Producer of the BBC “The Politics Show” has informed her that the broadcast has been rescheduled for May 10th.  Part of the APPG on ME meeting held on 1 April is expected to be featured in this broadcast.  I will post more details nearer the time.

Latest on APPG on ME inquiry into NHS services

It’s proving difficult obtaining information around the non appearance of the dedicated website for the APPG on ME inquiry into NHS services for people with ME and also on the availability of minutes for the meeting held on 1 April – a meeting largely given over to discussion of the inquiry.

This is the most recent information I have:

Inquiry website:

At the meeting on 1 April, Dr Des Turner, Chair of the APPG on ME, is reported as having said that the website for the Inquiry would be launched later that week.

The 3 April Press Release had stated:

“People with M.E., carers and professionals are invited to submit suggestions for specific questions which should be asked in these surveys. Our deadline for receiving people’s ideas is 5 May 2009”.

It was intended that the inquiry website would be one method via which comments around patient surveys and service provider questionnaires could be submitted to the inquiry panel.  According to the draft Timetable circulated at the meeting on 1 April, the deadline for “people with ME to submit questions to Dr Turner via website or in writing” was also given as 5 May – next Tuesday.

Four weeks down the line, schedules are already starting to slip and no website has been launched.  Some members of the ME community may have been waiting for the website to appear in order to submit their suggestions.

I contacted the Office of Dr Ian Gibson (Secretary to the APPG on ME and APPG on ME Inquiry Panel Member) on Tuesday morning with concerns about the non materialisation of the website but have received no response.

I have been told by Action for M.E. that the organisation does not have anything to do with the APPG Inquiry other than that it is related to ME and it was suggested I chase Dr Turner.

Dr Turner issued the following on Tuesday afternoon:

That the inquiry website is currently being built but that for the time being, the Terms of Reference have been placed temporarily on Dr Turner’s parliamentary website at:
http://iwc2.labouronline.org/165220/me-nhs-enquiry

That once the “APPG ME” website has been built, the information on the parliamentary website will be placed on the new website along with the minutes of the previous meeting.

That currently, the deadline for written evidence is the 9th of June.

——————–

Note that the draft Timeline circulated at the APPG on ME on 1 April has not been published on Dr Turner’s website nor on Action for M.E. or the MEA’s websites and is not freely available online. 

Minutes of previous meeting:

At the meeting of the APPG on 1 April, a stenographer was present recording the proceedings. This is not the usual practice at APPG meetings.

Dr Turner is reported as having said that the minutes of APPG meetings were getting too long and that a transcript of this meeting would be available soon.

As already reported, here, Tony Britton had stood down from secretariat duties. I haven’t been able to establish whether, on this occasion, Heather Walker was present and also taking minutes in addition to the stenographer’s presence.

Enquiries have been made of Action for M.E. and of the Office of Dr Gibson (Secretary to the APPG on ME) as to the reason for the stenographer’s presence and to what purpose this transcript was to be put, and when and where it would be made available.

No response has been received from Dr Gibson.

In response to a request for a clarification, Action for M.E. tells me that their understanding is that the APPG was recorded and that the company who made the recording will be using it to provide a full transcript which will be made available via the Action for M.E. and ME Association websites.

Due to pressure of work, Action for M.E. says that it has not chased the company for the transcript.

According to Action for M.E., the intention is that transcripts will be made available for future APPGs – “presumably with a faster turnaround time – but will be funded by Action for M.E. and the ME Association and so will be subject to the usual funding pressures”.

——————-

Since this is a departure from the usual proceedings, the costs of which appear to be being met by the APPG secretariat, it would have been appropriate for Dr Turner to have briefly explained the reason(s) behind these changes.

What still isn’t clear, is whether in future the secretariat will still be minute taking during these meetings (or who will be undertaking this task) or whether the minutes will be prepared from these transcripts by Action for M.E.’s Policy Manager, once this new post is taken up.

One of the tasks written into the Job Spec is:

“7. Provide the Secretariat for the All Party Parliamentary Group (APPG) at Westminster, liaising with the office of the Chair of the APPG and others to organise meetings, prepare minutes and agenda and ensure timely posting of information on our website, facilitate actioning of decisions eg. by drafting letters, maintain APPG files.”

If the minutes were going to be largely extracted from transcripts, unless someone is also minute taking during the course of the meeting, I can foresee problems around the identification of speakers, since those making contributions at meetings do not always announce their names before speaking. These are informal meetings, often up to two hours long, with contributions from the floor as well as from committee members, parliamentarians and invited speakers.

Also, it’s not clear whether the production of the minutes for the last meeting is dependent upon the receipt of an externally produced transcript or whether minutes were also being taken during that meeting by Heather Walker; that is, are we still waiting on Action for M.E. to write up the minutes and have them approved by the Chair, or are we waiting on the provision of a transcript before the minutes can be extracted from that?

This was an important meeting, devoted primarily to discussion around the APPG Inquiry. But four weeks down the line, we still have no Inquiry website, no minutes, no transcript and no official explanation for this change in procedure which is said to be being facilitated through patient organisation funding.

A statement of clarification from the ME Association would be welcomed.

Suzy Chapman

30 April 2009

RiME: Comments re. Surveys for APPG on ME NHS Services Inquiry

Campaigning for Research into ME (RiME)

NHS Services Inquiry

RiME’s Comments re. Surveys for Services Inquiry was sent to Dr Turner today 29/4/09 (below).

We encourage ME patients and carers to write in (those who can). If you do, please send us copies. We feel it useful in these situations to have a bank of comments. If those running the Inquiry were to publish in 2010 a favorable report and say ‘we had few, if any, adverse comments’ at earlier stages of the process, that comment can then be rebutted (remember Lord Turnberg’s remark re. the Royal Colleges Report in the House of Lords Jan. 04?).

Comments to turnerd@parliament.uk  (in word format) or Dr Des Turner MP, 179 Preston Road, Brighton, BN1 6AG by May 5.

Note: the May 5 deadline is for surveys comments (oral and written evidence comes later).

RiME will shortly be setting up a new folder on its website entitled ‘Services Inquiry’. It will contain information on the Terms of Reference, RiME’s responses, and others’ comments.

—————————-

Dear Dr Turner,

The document ‘APPG Inquiry on NHS services provision for people with ME, Draft, Terms of Reference’ was distributed at the APPG meeting April 1 2009. It is not signed but since it begins ‘APPG Inquiry … ‘ it would seem reasonable to assume that you are responsible for its contents as Chair of APPG on ME. The questions below, accordingly, are to you. Time is short, so I will confine my comments to Para. 2:

…. M.E. is classified as a neurological illness under the World Health Organisation classification (ICD G93.3). However the NHS largely uses the term Chronic Fatigue Syndrome instead of M.E. or else adopts the hybrid CFS/M/E. in diagnosing and treating patients. Terminology is a contentious matter. It has some bearing on this inquiry because to use only the precise WHO classification of M.E. above will impede access to information from the NHS that is crucial to the success of this inquiry…..

It is poorly written and difficult to understand. Let’s break it down sentence by sentence:

1. M.E. is classified as a neurological illness under the World Health Organisation classification (ICD G93.3).

Correct. We understand that.

2. However the NHS largely uses the term Chronic Fatigue Syndrome instead of M.E. or else adopts the hybrid CFS/M/E. in diagnosing and treating patients.

ToR 2 trace the 13 CNCCs and 50 LMTs back to the CMO Report 2002. The CMO Report, of course, was never about G93.3 ME (note that a number of ME organisations wouldn’t sign up to it eg the 25% Group wouldn’t sign primarily because it didn’t recognise G93.3). Instead it used a composite term ‘Chronic Fatigue Syndrome/Myalgic Encephalomyelitis’ (‘CFS/ME’). ‘CFS/ME’ is an artificial construct with no diagnostic or research criteria and no scientific precision. What the Government did was to fudge G93.3 ME with a host of other illnesses that would fit a loose definition of CFS; ME, consequently, gets skewed and diluted (1).

So, can you tell us please: Since the APPG on ME recognises G93.3 why is it leading an inquiry on something else?

If the APPG had integrity, should it not (1) distance itself from any services inquiry (2) be critical of the ‘CFS/ME’ Services (3) fight for biomedical ME Research?

3. Terminology is a contentious matter.

It shouldn’t be, unduly. That is, if the powers to be adhered to the ICD G93.3 classification of ME, and the illness described by the Canadian Criteria – a neuro-immune-endocrine-vascular illness.

4. It has some bearing on this inquiry because to use only the precise WHO classification of M.E. above will impede access to information from the NHS that is crucial to the success of this inquiry.

This fourth (final) sentence is very hard to make sense of. It seems to contain a number of confused and conflated points:

It has some bearing on this inquiry

In other words, it is secondary to the inquiry?

Trying to understand the whole paragraph: The inquiry (about ‘CFS/ME’) is the all important thing and mere matters of classification and nomenclature must not be allowed to get in its way?

Again, if the APPG had integrity should it print such a statement? Should it not fight to keep ME separate from loosely defined CFS?

the success of this inquiry. Those words would seem to indicate (well, this is how it is being interpreted by some) that those involved in writing the document predict a successful outcome; that is, a report that concludes favorably on existent ‘CFS/ME’ services in England? I refer you to RiME’s response to ToR 1.

I ask that you answer each of the four questions (underlined) please.

————————————-

Organisations are asked to submit suggestions re. surveys by May 5.

If the surveys use artificial constructs such as ‘CFS/ME’ then it will render the Inquiry invalid (see above). Moreover, will the Inquiry team approach providers who supply Chronic Fatigue Services; here, the ME disappears altogether. For example, will you approach the Chronic Fatigue Clinics in Kent? Do they not exclude persons with neurological illness via Section 5.4 of their Admittance Criteria?

If you were to, let’s be clear as to what you would be doing: You as Chair of the APPG on ME which recognises G93.3 ME, would be investigating services which exclude patients with neurological illness, yes?

Could you please also answer this fifth question.

Yours Sincerely, Paul Davis RiME rimexx@tiscali.co.uk   www.rime.me.uk

(1) For more information on CMO Report and York Review 1 see RiME Newsletters 3 + 4 (RiME Website).

RiME’s Response to Terms of Reference 1 Nov. 2008….

Independent: What’s wrong with you? It depends where you live (Wessely)

Update: Letter below was published in the print edition on 30 April.

The ME Association has made the following response which includes this description of “Pacing” – a description which sounds more like GET (Graded Exercise Therapy) or APT (Adaptive Pacing Therapy) to me:

“The key to recovery in ME/CFS is careful pacing of activities – a process involving small but flexible increases in activity that take account of the person’s limitations.”
 


http://www.meassociation.org.uk/content/view/852/161/

ME Association responds to The Independent

The ME Association has responded to an article by Jeremy Laurence in which he interviewed Professor Simon Wessely, which appeared yesterday (Monday, April 27) on the health pages of The Independent newspaper.

INTENDED FOR PUBLICATION

RE: WHAT’S WRONG WITH YOU? IT DEPENDS ON WHERE YOU LIVE

Sir

Whilst agreeing that many French doctors still refuse to accept that ME/CFS exists as a distinct clinical entity, this situation cannot be used to conclude that the illness is not present in France.

A proper epidemiological study (1), which investigated the prevalence of persistent fatigue in France, found that this is a significant and common presenting complaint in primary care. Here at The ME Association we are regularly contacted by people in France who are desperately seeking help with regard to both diagnosis and management – some of whom appear to be receiving inaccurate explanations for their persisting ill health.

The simple fact is that if people with ME/CFS do too much and exceed their limitations – as may be advised by doctors who believe the problem lies in abnormal illness beliefs and behaviour. – they invariably feel worse as a result. The key to recovery in ME/CFS is careful pacing of activities – a process involving small but flexible increases in activity that take account of the person’s limitations. All of which is consistent with the neurological abnormalities that has led the World Health Organisation to officially classify ME as a neurological disorder (in section G93.3 in ICD10)..

Dr Charles Shepherd
Hon Medical Adviser, ME Association

7 Apollo Office Court
Radclive Road
Gawcott
Buckinghamshire MK18 4DF

Web: www.meassociation.org.uk

Reference

The epidemiology of fatigue and depression: A French primary care study. Psychological Medicine. 25 (5) 895 – 906, September 1995.

———————————-

Most likely written up from the same press handout as the Wessely ”interview”, New Scientist, 13 March issue. 

From this morning’s Independent:


http://tinyurl.com/independentwessely

Tuesday 27 April 2009

What’s wrong with you? It depends where you live

Jeremy Laurance looks at how different countries treat the same symptoms

‘Simon Wessely, professor of psychiatry at Kings College, London, who has studied cultural trends in illness, says: “People will always seek explanations when they feel under the weather or not quite right. Much of it depends on what is currently hot in medicine. Each age and each culture has its own answers. Doctors use many different labels to describe patients with unexplained symptoms – somatisation, burn-out, chronic fatigue syndrome, multiple chemical sensitivity, subclinical depression, post traumatic stress disorder, low blood pressure, spasmophilia – despite no evidence that any of these are distinct or separate entities. Our belief is that most of these labels refer to similar clinical problems.”‘

Read full article in the Independent here

———————-

You can send letters to the Editor for the print edition via email (full contact details will be required) to: letters@independent.co.uk  or leave a comment on the article. I’ve left the following comments, today:

Interests
Tuesday, 28 April 2009 at 07:26 am (UTC)

Does Professor Simon Wessely function as an external advisor to the American Psychiatric Association (APA) DSM Revision Process, other than his participation in the APA/NHI/WHO funded DSM-V Beijing 2006 diagnosis-related research planning symposium on “Somatic Presentations of Mental Disorders”?

and

Re: Mistreated by PSCYHOLOGY [sic]
Tuesday, 28 April 2009 at 01:52 pm (UTC)

This article bears such striking similarities to the “interview” published in New Scientist (Mind over Body? 13 March) that one suspects it has been written up from the same press handout.

And yes, once again, Professor Wessely disregards WHO ICD-10 taxonomy, using the terms “chronic fatigue”, “ME” and “Chronic Fatigue Syndrome (CFS)”, interchangeably, as though all three were indexed in the same Chapter of ICD-10, which they are not.

Only recently, the WHO Collaborating Centre, Institute of Psychiatry, was obliged to correct the website for the WHO Guide to Mental and Neurological Health in Primary Care where they had incorrectly placed “chronic fatigue” at G93.3. This website has now been amended to read “chronic fatigue G48.0″ – which is still incorrect; it should read F48.0 (Chapter V).

It has sat like this for weeks. Would someone from the WHO Collaborating Centre or the Institute of Psychiatry or perhaps, Professor Wessely, himself, if he is reading these comments, please attend to this error?

Have a look at it here:


http://www.mentalneurologicalprimarycare.org/content_show.asp?c=16&fid=1252&fc=011065

———————————-

For the New Scientist “interview” with Professor Simon Wessely go to:


http://www.newscientist.com/article/mg20126997.000-mind-over-body.html

There have now been 564 responses in the Comments to this Wessely “interview”.  Two letters were printed in the magazine a couple of weeks after the article appeared – one by Dr Charles Shepherd, the other by Tom Kindlon; a further two letters have appeared in the print edition.  Prof Wessely has responded once, via the Comment facility, but author of the article, journalist Claire Wilson, has made no response.

Following the publication of today’s article in the Independent, I have added the following comments to the New Scientist:

Wessely In The Independent
Tue Apr 28 08:10:00 BST 2009 by Suzy Chapman

Very similar article in the Independent, today, and likely written up from the same press handout as this New Scientist “interview” with Prof Wessely.


http://tinyurl.com/independentwessely

Can anyone confirm whether Prof Simon Wessely functions as an external advisor to the American Psychiatric Association (APA) DSM Revision Process, other than his participation in the APA/NHI/WHO funded DSM-V Beijing 2006 diagnosis-related research planning symposium on “Somatic Presentations of Mental Disorders”?

————————-

It’s All In The Definition
Tue Apr 28 09:24:42 BST 2009 by Suzy Chapman

Note that in the Independent article, Prof Wessely disregards WHO ICD classifications and again uses the terms “chronic fatigue” and “ME (myalgic encephalitis)” [sic] and “Chronic Fatigue Syndrome (CFS)”, interchangeably.

In the Independent article he comments on the term “Neurasthenia” – which he says is a diagnosis not used in Britain for a century.

Prof Wessely has a new co-authored paper published this month around the theme of “Neurasthenia”:

The relationship between fatigue and psychiatric disorders: Evidence for the concept of neurasthenia. Journal of Psychosomatics. Samuel B. Harvey, Simon Wessely, Diana Kuh, Matthew Hotopf

Abstract:


http://www.ncbi.nlm.nih.gov/pubmed/19379961

The Editor of the Journal of Psychosomatics is Francis Creed. Creed and Michael Sharpe are both members of the APA DSM-V “Somatic Distress Disorders” Work Group, aka the DSM-V “Somatic Symptom Disorders” Work Group.

Both Sharpe and Creed were members of the CISSD Project, administered by Action for ME. Dr Richard Sykes, who was the Co-ordinator of the CISSD Project, is now working on the “MUPSS Project” in association with the WHO Collaborating Centre, Institute of Psychiatry.

NICE CFS/ME guidelines judicial review: Reflections on video

The NICE CFS/ME guidelines judicial review

Reflections on video

from GBCTwo

This is the first of a series of videos in which people give their impressions and views on the recent judicial review into the NICE guidelines on CFS/ME.

The video is in YouTube’s High Quality format and for those with large download capacities/faster internet connections and more powerful computers, the video is also available in High Definition.

APPG on ME: Changes to the secretariat service

APPG on ME: Changes to the secretariat service

For some years now, the provision of secretariat services to the APPG on ME has been shared between Action for M.E. and the ME Association, with the tasks of minute taking and the preparation of agendas and writing up of minutes alternating between these two patient organisations.  This has sometimes led to confusion over which organisation is anticipated to be issuing the agendas and compiling the minutes from one meeting to the next.

There have also been issues around the lack of a defined and effective channel of communication between members of the ME community and regional and local ME group reps and the APPG committee.

It has not been clear in the past, whom one should approach in connection with requests for the placement of specific topics on the agenda or with queries relating to forthcoming or previous meetings.  One can often find oneself being passed back and forth between the APPG secretariat, the Office of the APPG Secretary, Dr Ian Gibson, and the APPG Chair, Dr Des Turner, with Dr Turner’s Office rarely responding.

Given that no schedule is drawn up at the beginning of the parliamentary year for how many meetings will take place and in which months, and with provisional meeting dates frequently postponed in order to accommodate the availability of speakers, this compounds the general communication difficulties that exist between the APPG committee, the secretariat and the ME community in whose interests the APPG on ME was first set up.

There is also the feeling that the influence of the secretariat representatives over what topics get placed on the agenda for discussion and which speakers are invited to attend meetings has, in the past, favoured the interests of the four main national patient organisations and that the APPG on ME should be more responsive to and more reflective of a wider range of views.

I was told by Tony Britton (ME Association Press and Publicity), in February, that he had stood down from secretariat duties.

I endeavoured to obtain a clarification from the Office of Dr Ian Gibson as to who would be taking on the duties that Tony Britton had undertaken on behalf of the MEA or whether, in future, the secretariat function would devolve entirely to Action for ME.

This query was passed by Sarah Vero (Dr Gibson’s researcher) on to Dr Turner. This in turn, appeared to have been passed back to AfME’s Heather Walker, who responded by forwarding me a copy of the Agenda for the 1 April meeting, although none of these answered my question whether in future, the secretariat to the APPG would become sole responsibility of AfME – an example of how queries around the APPG are passed around like a parcel at a party.

While we are waiting for clarification, there are some developments that I need to draw attention to:

At the meeting of the APPG on ME, on 1 April, attendees were surprised to find the BBC were videoing part of the meeting for inclusion in a forthcoming edition of BBC1′s “The Politics Show”. It had not been generally known that this was going to be taking place during this meeting and had not been included on the Agenda.

(For an update on the content and date of this broadcast see:
http://www.meassociation.org.uk/content/view/846/161/
 )

Additionally, a stenographer had been present at the meeting, recording the proceedings and Dr Turner is reported as having said that a transcript of the meeting would be available soon. This is not usual practice for these meetings but Dr Turner did not appear to feel the need to explain the reason for the stenographer’s presence or to what purpose a transcript of the proceedings of the meeting would be put.

There seems to be some confusion within AfME staff as to the purpose of this transcript.  AfME’s Communications Manager, Heather Walker, has been asked to clarify the reason for the stenographer’s presence and I will update on the purpose and availability of this transcript when I have received a clarification. 

We are still waiting for minutes of this meeting to be published and also for the dedicated website for the APPG Inquiry into NHS services to be launched. These delays are of considerable concern, given that the deadline for people to submit questions to Dr Turner around the patient survey and service provider questionnaires, via the website or in writing, is 5 May – which is fast approaching.

The second issue is the creation by AfME of a Senior Management level Policy Manager/political lobbyist position. See previous posting for a copy of the full Job and Person spec or go to:


http://www.afme.org.uk/aboutus.asp?table=contenttypethree_detail&pagetitle=Job%20opportunities&id=146

Policy Manager job description


http://www.afme.org.uk/res/img/resources/FINAL%20Policy%20Manager%20job%20description%20at%2023%204%2009.doc

According to the Job Spec, one of the various roles of the post holder will be to:

“7. Provide the Secretariat for the All Party Parliamentary Group (APPG) at
Westminster, liaising with the office of the Chair of the APPG and others to
organise meetings, prepare minutes and agenda and ensure timely posting of
information on our website, facilitate actioning of decisions eg. by
drafting letters, maintain APPG files.”

Which could imply that AfME is intending to strengthen its relationship to and involvement in the operation of the APPG.

As noted above, it remains to be confirmed whether the MEA will be retaining an involvement in the secretariat function or whether, in future, this role is going to become sole preserve of AfME. It would be helpful if the ME Association could clarify the extent of its future commitment to the provision of APPG secretariat.

If AfME’s Policy Manager were to also function as a channel of communication between the public and the APPG, then having a centralised point of contact might be seen as advantageous, given the existing barriers to effective communication between the ME patient community and the APPG committee.  Another view is that AfME may seek to act as gatekeepers, controlling access to the APPG committee.

To what extent, then is the post-holder anticipated to involve themselves in the day to day administration of APPG business, over and above the preparation of agendas and minutes?

The Job spec lists organising meetings and facilitating “actioning of decisions eg. by drafting letters” and maintaining APPG files. Does this mean that AfME is seeking to develop greater control over the functioning and operation of the APPG?

When Tony Wright, MP was Chair of the APPG, he maintained a resource of APPG minutes, reports etc on his own parliamentary website. Although agendas, minutes, notices and related APPG material are archived on a number of sites – AfME’s website, the MEA’s website (and also here on ME agenda), I have always considered that the APPG on ME should be maintaining a website or blog platform of its own. This need not be an expensive or high maintenance proposition.

Of course, provision of the secretariat to the APPG is only a small part of the Policy Manager’s remit.  But if, with the creation of this new post, AfME is taking the opportunity to broaden out the scope of the role of APPG secretariat, will AfME be seeking to:

a) Take greater responsibility for the functioning and operation of the APPG?
b) Become the central point of contact between the public and the APPG committee?
c) Become authors for and principal disseminators of information for the APPG by maintaining dedicated webpages on behalf of the APPG committee as an extension to its current practice of publishing notices, minutes and agendas on its News pages?

In the context of the creation of this new post of Policy Manager and political lobbyist, and AfME’s intentions to strengthen its links with parliament and government departments and our longstanding concerns around AfME’s existing relationship with government, this level of integration with the APPG would discomfort me. 

A statement setting out Action for M.E. and the ME Association’s respective future responsibilities towards the APPG and identifying channels of communication between the public and the APPG committee would be appropriate.

Suzy Chapman
27 April 2009

Action for M.E. seeks Policy Manager/political lobbyist

Action for M.E. is seeking to recruit a Policy Manager/political lobbyist

Action for M.E. has created a new position for a full-time Policy Manager/political lobbyist and the following vacancy is currently being advertised on its website:

 —————————-

Part time and Full time Vacancies

Policy Manager
£28k-£30k
Full-time
2 years fixed term
Based in central Bristol offices (with travel to London and Edinburgh)

Experienced policy officer, policy manager or political researcher required by leading M.E. campaigning charity.

Policy Manager job description:


http://www.afme.org.uk/res/img/resources/FINAL%20Policy%20Manager%20job%20description%20at%2023%204%2009.doc

Policy Manager application form:


http://www.afme.org.uk/res/img/resources/Policy%20Manager%20application%20form.doc

Or open document here:  Policy Manager Job Spec

Closing date for applications: 22 May 2009
Interviews: 18 June 2009
Start date: August 2009

Policy Manager

Job description

Base: Bristol with regular travel to London, Edinburgh and elsewhere

Salary: £28,000-£30,000

Term: Full-time, fixed term for two years in the first instance, extension subject to performance and funding

Hours: 9am-5pm, Monday-Friday, although flexibility will be required

Reports to: Chief Executive Officer (CEO). The Policy Manager will be part of the Senior Management Team (SMT) which includes the Finance Manager, Communications Manager, Fundraising Manger and Head of Support Services.

Manages: Project Coordinator Scotland (who is home-based in Scotland)

Key ext. contacts: People with M.E. and their representative groups. MPs, MSPs, Lords and parliamentary staff and representatives of:

Government departments eg. Department of Health, Work and Pensions; key NHS contacts eg. Clinical Champions for M.E.;

public agencies eg. Medical Research Council, National Institute for Health and Clinical Excellence, Scottish Public Health Network; voluntary sector partners and coalitions eg. Association of Young People with M.E., Disability Alliance, National Voices etc

Role: 1. To create a new dedicated policy function within Action for M.E., which will involve developing Action for M.E.’s policy position and lobbying strategy and being responsible for political lobbying by the charity.

2. To monitor national and regional policy development and implementation and service delivery – particularly in the areas of research, health, welfare, social care, employment, education etc, as they relate to people with M.E. and their carers

3. To provide the Secretariat for the All Party Parliamentary Group at Westminster; to represent Action for M.E. at meetings of the Cross Party Group in Edinburgh; to represent Action for M.E. at meetings which relate to national and regional policies and practices.

4. To be Secretary to the trustees’ new Policy Group, which will develop and update the charity’s policies on M.E.-related issues, monitor and evaluate their effectiveness and conduct regular assessments of the charity’s compliance with key policies.

5. To be an Action for M.E. media spokesperson on policy issues.

6. To develop contacts, links and networks to facilitate partnership working and facilitate change.

7. To be responsible for ensuring that Action for M.E. responds to relevant public consultations.

Tasks: Create a new policy function

1. Undertake desk / online research to monitor information sources produced by government departments, think tanks, non-governmental organisations and other bodies, in order to keep Action for M.E. informed of any developments related to their field of activity.

2. Register with relevant public agencies and service providers to receive updates and keep Action for M.E. informed about new government initiatives, legislation, guideline/procedural/ legislative review and public consultations.

3. Identify and forecast policy developments.

4. Draft briefing papers on policy issues for internal and external use.

5. Report to the CEO/SMT on all relevant developments, flagging up issues which are of both long-term strategic importance to the charity as a whole and immediately relevant to us in terms of policy development, campaigns, information and support services, fundraising, communications including press, public consultations with stakeholders, etc

6. Draft and implement policy and campaign strategies in association with the CEO/SMT. Campaign strategies will include lobbying, for which the Policy Manager is responsible in association with the CEO, and media, for which the Communications team is responsible.

National and regional parliamentary duties

7. Provide the Secretariat for the All Party Parliamentary Group (APPG) at Westminster, liaising with the office of the Chair of the APPG and others to organise meetings, prepare minutes and agenda and ensure timely posting of information on our website, facilitate actioning of decisions eg. by drafting letters, maintain APPG files.

8. Represent Action for M.E. at meetings of the Cross Party Group (CPG) in Edinburgh. The Policy Manager will line manage Action for M.E.’s Project Co-ordinator for Scotland, who provides secretarial support to the CPG.

Policy and lobbying activities

9. Represent Action for M.E. at meetings in London, Edinburgh or elsewhere organised by public or voluntary agencies which relate to national and regional policies and practices which affect people with M.E. and their carers.

10. Be responsible for responding to government and other consultation documents, following consultation with colleagues, members and others as appropriate

11. Foster good relations with government and with statutory, voluntary and private bodies by maintaining regular contact, in person and in writing, with politicians, civil servants, and/or staff in local authorities and regulatory bodies. Keep MPs, MSPs and other policy decision makers informed about developments which relate to M.E. and to Action for M.E.’s policy-related activity and campaigns.

12. Work to place questions to Ministers and to encourage MPs, MSPs and members of the Lords to debate issues which relate to M.E.

Communicating policy

13. Work with the Communications team, to ensure that policy information on the charity’s website is up-to-date and to produce fact sheets, articles and e-communications for external use.

14. Liaise with the Communications team and IT manager when Action for M.E. consults with members and other stakeholders on policy-related issues.

15. Operate as an Action for M.E. media spokesperson on policy issues

16. Give presentations on policy/practice and/or Action for M.E. activities or strategy as they relate to policy/practice as required.

17. Liaise with the Fundraising team on submissions to statutory bodies and trusts which relate to policy issues.

Staff and work management

18. Line manage the Project Co-ordinator for Scotland, who is part-time and home based in Scotland, agreeing action dependent upon projects planned or underway.

Line management responsibility may increase if funding is obtained for additional posts

19. Recruit and line manage an intern or volunteers to support the policy function.

Person specification

The role will require the post-holder to have or to develop comprehensive knowledge and understanding of all the policy issues which affect the lives of people with M.E. and their carers and to be able to communicate Action for M.E.’s stance on these issues clearly and effectively to a variety of audiences.

Essential

1. At least three years’ previous experience as a policy officer or policy manager or as a political researcher.

2. Ability to assimilate and understand complex information and issues, including legislation and other policy documents, research findings and guidelines for healthcare professionals and other public service providers. This would include the ability to understand and interpret basic medical research.

3. Ability to communicate information and issues well, to people at all levels, face to face, by telephone and in writing.

4. Excellent diplomatic, networking and persuasion skills, including consensus building skills.

5. Excellent presentation skills: ability to think clearly, deliver a presentation or key point credibly, fluently and effectively whether as a participant in a high-level meeting, conference speaker or speaker at a local support group gathering.

6. Sensitivity in working with people of all ages who are very ill and often highly informed about and frustrated by their illness and others’ perceptions and misconceptions of it. Ability to respect absolute confidentiality when required.

7. Broad understanding of M.E. and genuine desire to improve the lives of people with M.E.

8. Willingness and ability to travel to London, Edinburgh and elsewhere as often as required. This could occasionally imply an overnight stay away from home.

9. Willingness and ability to undertake online research and to communicate extensively by e-mail and telephone will be required.

10. Experience of line-managing one or more colleagues.

Desirable

1. A degree or equivalent, relevant experience eg. in a health, welfare or social policy setting. A relevant degree / demonstrable interest in politics would be an advantage.

2. Experience of working in the voluntary sector, with the public sector.

3. Experience of working with people at all levels, including MPs, MSPs or other elected members, government Ministers, their staff and officials.

4. Experience of working with different agencies across the country.

5. Experience as a spokesperson would be an advantage.

Terms & conditions

Full terms and conditions are available in the Staff handbook, which is available from sara.brooks@afme.org.uk on request. The following summary has been compiled in anticipation of frequently asked questions. Applicants who have additional questions should feel free to ask them at interview.

Salary

The salary for this post is £28,000-£30,000. Salaries are paid on the last day of each month by direct transfer into bank accounts.

Hours of work

Regular hours of work* will be agreed with the CEO but flexibility will be essential. (*The standard working day for full-time employees is 7 hours excluding lunch breaks and “normal hours” are 9am to 5pm). Overtime is not paid. Reasonable time off in lieu will be awarded if staff are required to work exceptional hours.

Probationary period

This is a fixed term 2 year post, subject to satisfactory performance during the initial three-month probationary period and subsequently, through six-monthly appraisals by the CEO. The charity aims to develop a permanent policy function, subject to the availability of funding.

Notice period

One month’s notice will be given by the employee or employer if the contract is to be terminated.

Public holidays

Staff are entitled to paid leave during bank holidays and public holidays.

Annual leave

Full-time staff are entitled to 26 days’ leave per calendar year. All time off must be agreed in advance with the line manger.

Pensions

Action for M.E. has instituted a Group Personal Pension Scheme, administered by Foster Denovo, on behalf of Friends Provident. New employees may join this scheme after three months’ service. It is a joint contributory scheme, with a minimum three percent employee contribution. Action for M.E. will match contributions up to a maximum of three percent of the employee’s basic salary.

How to apply

It is important that your application describes how your skills and experience match the role and requirements of this post. Please send your application form, completed Equal Opportunities Form and a covering letter explaining why you are best suited to the post, to: Sara Brooks, Action for  M.E., 38 Victoria St., Bristol BS1 6BY. Tel: 0117 927 9551. E-mail: sara.brooks@afme.org.uk

Closing date for applications: 22 May 2009

Interviews: 18 June 2009 (tbc)

Start date: 3 August 2009 (negotiable)

The Elephant in the Room Series Two: Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV

Elephant70

Image | belgianchocolate | Creative Commons

Keywords

APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    Somatic Symptom Disorders Work Group    DSM-ICD Harmonization Coordination Group    International Advisory Group    Revision of ICD Mental and Behavioural Disorders    Global Scientific Partnership Coordination Group    ICD Update and Revision Platform    WHO Collaborating Centre    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    FSS    MUS    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS

——————–

The Elephant in the Room Series Two:

The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV-a preliminary report

 

Ed: Four members of the DSM-V Workgroup on Somatic Symptom Disorders (Arthur J. Barsky, Francis Creed, James L. Levenson, Michael Sharpe) were members of the international CISSD Project. CISSD Project Co-ordinator: Dr Richard Sykes; Principal Collaborator: Rachel Jenkins (WHO Collaborating Centre); Principal Administrators: Action for ME. The CISSD Project was chaired by Kurt Kroenke and Michael Sharpe.

The DSM-V Workgroup on Somatic Symptom Disorders is also known as the DSM-V Somatic Distress Disorders Work Group see:


http://www.psych.org/MainMenu/Research/DSMIV/DSMV/WorkGroups/SomaticDistress.aspx

Francis Creed is the Editor of the Journal of Psychosomatic Research in which this Editorial is published.

For further information around the DSM and ICD revision processes and the CISSD Project see:


http://meagenda.wordpress.com/dsm-v-directory/

—————————————————

Journal of Psychosomatic Research

Articles in Press

Editorial


http://www.jpsychores.com/inpress

The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV-a preliminary report . EDITORIAL

In Press Corrected Proof, Available online 20 April 2009

Joel Dimsdale (a) Francis Creed (b)
on behalf of the DSM-V Workgroup on Somatic Symptom Disorders

a University of California, San Diego, La Jolla, CA, USA
b Psychiatry Research Group, School of Medicine, University of Manchester, Rawnsley Building, Oxford Road, M13  9WL Manchester, UK

Article Outline here: 


http://tinyurl.com/ooyw69

Corresponding author. Psychiatry Research Group, School of Medicine, University of Manchester, Rawnsley Building, Oxford Road, M13 9WL Manchester, UK. Tel.: +44  0161 276 5331; fax: +44 0161 273 2135.

Members of the Somatic Symptom Disorders workgroup for DSM-V. Joel Dimsdale (Chair), Arthur J. Barsky, Francis Creed, Nancy Frasure-Smith, Michael R. Irwin, Frank Keefe, Sing Lee, James L. Levenson, Michael Sharpe, Lawson R. Wulsin, Javier Escobar.

PII: S0022-3999(09)00088-9

doi:10.1016/j.jpsychores.2009.03.005


http://www.jpsychores.com/inpress


http://www.jpsychores.com/article/S0022-3999(09)00089-0/fulltext


http://www.jpsychores.com/article/S0022-3999(09)00088-9/pdf

—————

Papers from May 2009 edition of  Journal of Psychosomatic Research


http://www.jpsychores.com/current
 

Journal of Psychosomatic Research
Volume 66, Issue 5, Pages 359-472 (May 2009)

Editorial

New research on medically unexplained symptoms—much remains to be done before DSM V and ICD-10 can provide a satisfactory new classification
Francis Creed
pages 359-361

——————————

Review Article

Medically unexplained symptoms, somatisation disorder and hypochondriasis: Course and prognosis. A systematic review, 17 December 2008
Tim C. olde Hartman, Machteld S. Borghuis, Peter L.B.J. Lucassen, Floris A. van de Laar, Anne E. Speckens, Chris van Weel
pages 363-377

Abstract


http://www.jpsychores.com/article/S0022-3999(08)00472-8/abstract
 

Volume 66, Issue 5, Pages 363-377 (May 2009)

—————————–

Commentary

The outcome of medically unexplained symptoms—Will DSM-V improve on DSM-IV somatoform disorders?
Francis Creed
pages 379-381

——————————

The relationship between fatigue and psychiatric disorders: Evidence for the concept of neurasthenia, 04 March 2009
Samuel B. Harvey, Simon Wessely, Diana Kuh, Matthew Hotopf
pages 445-454

Abstract


http://www.jpsychores.com/article/S0022-3999(08)00585-0/abstract

——————————

24 April 2009

RiME: NHS Services Inquiry 22 April 2009

Permission to Repost

Campaigning for Research into ME (RiME)

NHS Services Inquiry

Before the summary of last APPG meeting plus Press Release (below), a few comments:

Note that the inquiry is about ‘ME/CFS’. The services descriptions in many parts of the country (see RiME Website, Clinics folder) demonstrate a wide remit re. patient controls. Not surprising given they are the product of the CMO Report, which was affected by work to do with a loose definition of CFS (see my comments at meeting).

So, this is not about ME as described by G93.3 or Canadian Criteria.

RiME will submit evidence but says, ‘in the context of ME does the project have integrity or credibility?’

The Chair of the APPG seems to be the person currently leading the inquiry. The APPG recognises G93.3 but the Inquiry, it appears, will be on something different.

If the APPG did have integrity and credibility, would it not be fighting the corner of ME patients; and if it were, would it not be critical of the clinics and pushing for biomedical ME Research?

Instead, we have the Inquiry. Already, people are commenting on it within a wider political context. Three on the committee (see below) are members of the Labour Party. A common question appears to be, ‘will it try to concoct a favourable report and publish it in the run up to the next election?’

RiME Summary of APPG Meeting 1/4/09

1.20 pm Terms of Reference 2 handed out by Heather Walker (AfME).

1.30 Meeting starts. Minutes becoming too detailed – Des Turner MP (Chair). Transcript will be available for this meeting soon. Minutes agreed after a couple of corrections.

Turner: Website with Inquiry details will be online next week.

Alan Golds says name of illness is important: CFS is not ME and this is at heart of issue. Turner says that’s debatable.

Jane Colby said ME must be separate from CFS.

Doris Jones says NICE guidelines naming of illness are at odds with WHO.

Annette Barclay asked about reporting on adverse reactions to treatments like CBT and GET in the NHS. She asked if this was covered in the ToR. Yes, said the Chair.

Jo Dubriel asked about drop-outs re. services.

Kirsty Heyward (Royal College of Nursing) said a study paper was under review (she spoke about different methods for measuring outcomes in CFS research) and will be published on PRIME website.

Sue Waddle asks if will there be anonymity for those giving evidence to inquiry. Turner says yes.

Joy Birdsey said parents feared child services.

Paul Davis RiME said that ME patients are boycotting the clinics because they are not about ME. I offered to read out anecdotes from ME patients in Yorks but Turner declined. The clinics are a product of the CMO Report 2002 and there is a road map: CMO Report > York Review 1 > a certain school of psychiatry. The toothpaste is now out of the tube. If I remember correctly, Turner said something about going with what we have.

Later, I mentioned that Sue Pemberton (OT Leeds Clinic) has done a survey saying 90% of patients had been helped by the service. Comments from an ME patient (1) the majority of attendees probably didn’t have ME (2) the clinics are dumping grounds for GPs who have patients with unexplained symptoms (3) what does help mean; little more than a chat perhaps?

Heyward says timetable for inquiry is too short. Doris Jones agrees. So did I (Paul Davis). Turner says Inquiry will be announced in press.

Andrew Stunell MP says inquiry will have limitations and people should not get their hopes up.
Peter Luff MP says report must be ready by next election (Stunell indicates May 2010).
Dr Derek Pheby has reservations about timetable.
Jill Cooper mentions how unhappy she is about the Milton Keynes conference this month (A).
Heather Walker (AfME) says that NICE guidelines might become mandatory.
Birdsey says that she knows of GPs who feel the government is interfering with their work.
Pheby – NICE guidelines are a curate’s egg.
Jones says that 88% of groups she contacted were against the NICE Guidelines.
Cooper says diagnosis is too wide and as a result, the illness is not taken seriously.

Sue Waddle said, if I remember correctly, (1) the Gibson Report was good but went up in a puff of smoke (2) the CMO Report was good but hadn’t been acted on.

Turner said that written evidence for Inquiry will be taken from patients and providers.

Next meeting: 2pm, 24th June 2009 – Turner. 14.55 Meeting ends.

(A) A paper was sent in by West Midlands ME Groups Consortium raising concerns about another NHS CFS/ME training conference in Milton Keynes; it is about mental health issues and getting patients back to work. It urged the CNCC to consider more robust diagnostic criteria ie Canadian and G93.3.

Disclaimer: the above is based on scribbled notes and I cannot guarantee 100% accuracy. It is confined to matters pertaining to Services Inquiry and related issues.

————————————-

APPG Press Release 3/4/09: NHS Inquiry

Dr Des Turner MP, Chair of the APPG on ME, has today issued a press release, launching an inquiry into NHS service provision for people with ME/CFS in England.

The inquiry committee will consist of Dr Turner MP, Dr Ian Gibson MP, Tony Wright MP, Andrew Stunell MP, Peter Luff MP and the Countess of Mar.

Announcing the terms of reference, Dr Turner said:

“The committee will consider written evidence from patients and professionals before inviting individuals and organisations to make oral presentations.

“Written evidence will include the findings of questionnaires, for patients and NHS service providers, which are currently being drawn up.

“People with ME, carers and professionals are invited to submit suggestions for specific questions which should be asked in these surveys. Our deadline for receiving people’s ideas is 5 May 2009.

“The cut-off point for the submission of written evidence will be 30 June 2009. Oral hearings are likely to take place in the middle of July.”

A website is being set up for the inquiry, which will include the timetable of activities.

Until the website is activated, correspondence to: Dr Des Turner MP, 179 Preston Road, Brighton, BN1 6AG.

————————————-

Overview:

Meeting: It was a bit better in that several raised concerns about nomenclature and classification; too, there was some criticism of the NICE Guidelines.

I don’t think it helps if people publicly express support for the CMO and Gibson Reports (certainly not in the context of services):

The CMO Report 2002 was not about G93.3 ME. It associated ‘CFS/ME’ with (1) inactivity and activity avoidance to be combated via GET (Section 46) (2) faulty belief systems to be combated via CBT (48). These types of treatment are now being implemented via the clinics.

The Gibson Report 2006 said (A) that it was extremely pleased with the advent of these centres and we hope they will be maintained and rolled out (5.1.) (B) that they were to his (Wessely’s) model (3.2) (C) that it was impressed with the work of Trudie Chalder (4.3) saying this treatment (CBT) has a role to play in treating CFS/ME.

Press Release – Inquiry: First, one has to get comments in re. survey by May 5. I’m going to take a short rain check on this (and commenting on Terms of Reference 2). Enough for the moment. RiME will post again, shortly, and give some space to inquiry on website.

Paul Davis

22 April 2002

 rimexx@tiscali.co.uk    www.rime.me.uk

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