News

Group collections for ME Research UK (MERUK).
Pauline & Mike Pearson organised the Group collection for ME Research UK (MERUK) at Becketts Farm on Saturday 28 May 2011.  Thank you to our volunteers.
Warwick Davis organised the Group collection for ME Research UK (MERUK) - Evesham Countryside Centre on Tuesday 22 November 2011. Thank you to our volunteers and Clyde.

Many thanks to everyone who supported the group collections for ME Research UK (MERUK).  A total of £360 has been sent to MERUK - £250 was collected at Becketts Farm on Saturday 28 May 2011, and £110 at Evesham Countryside Centre on Tuesday 22 November 2011. There were also collections for MERUK in 2008, 2009 and 2010.
Peter Luff MP, Mid Worcestershire at our February Droitwich meeting - He will be joining our Droitwich meeting on Friday 3 February at the Methodist Church, Amphlett House, Worcester Rd, Droitwich, WR9 8AW, from 1.30 pm.
“Dick Whittington”, 20 - 28 January, Stourport Civic Centre

Next January, the Stourport Monday Night Group’s production will be “Dick Whittington”  - please tell your friends.

Every penny of profit from the Stourport Monday Night Group’s pantomimes goes back into the local community.  Over 80 local organisations benefited by over £19,000 from their production of “Red Riding Hood” last year - including our group.

Help the Monday Night Group to continue helping us. 

They are great audience participation productions.  Call 01299 825170 for tickets.  Daytime and evening tickets available. Further information on their website - www.mondaynightgroup.org. 2011.11
Beryl's Bingo

Our group is receiving £100 from Beryl - our thanks to Beryl and the Bishops Frome Bingo Gang.

Beryl raised £645 at her latest Bingo session - this time she advertised it as being for ME Research and the local support groups, as she wants to help us and the Herefordshire CFS/ME/FMS Group as well as continuing to raise funds for research.   Beryl Compton of Stanford Bishop, on the border of the two counties, has been a member of both groups for many years.

We read earlier this year that Beryl had raised £45,000 during the last 23 years, for the MEA Ramsay Research Fund. 2011.11
"Possible changes to your Employment and Support Allowance" ... -
copy of letter to claimants added to the Benefits News page. 2011-10

Raising money at the Stourport 'Shuttle' 10K run.
Steve Weeks ran in the Stourport 'Shuttle' 10K on Sunday 2 October, with a time of 1 hr 8 mins 15 sec, starting and finishing at Stourport Sports Club. He was wearing a ME Research UK vest, and was raising funds for ME Research UK (MERUK) and our Group. Steve has raised £305 to date and would welcome more funds to boost this fundraising.

UK Coalition Agreement May 2010.
Coalition Agreement document. (pdf, 475kb)
(There is also a second coalition document on the Cabinet Office website.)
(Also see: initial Coalition Agreement of 11 May 2010.)

News feeds (RSS) for Action for M.E. News, M.E. Association and Government Legislation are now available together on the same page.
Please see the link that appears under 'News' at the top of the page.

New International Consensus Criteria Update (Updated/final pdf file) -
From: www.meassociation.org.uk/?p=8280
New International Consensus Criteria for M.E., Journal of Internal Medicine, October 2011 - by Tony Britton on October 4, 2011

"We reported on 22 July that the Journal of Internal Medicine had published an online draft of new International Consensus Criteria for Myalgic Encephalomyelitis that had been signed off by 25 doctors and scientists working in the field.

The document has now been proof-read and has been made available through the Journal of Internal Medicine to read in its final form. To download the pdf of the final version (which runs to 12 pages), please click HERE." 2011-10

Myalgic Encephalomyelitis: International Consensus Criteria,
!See Update above!
Journal of Internal Medicine, 20 July 2011
Pdf document of the full criteria (335kb). (Pages 9-15 are references.)

The full article is in text form on the M.E. Association website (for the criteria,  search for Table 1 on the M.E. Association link, or see page 2 of this pdf that is on the research1st website). The pdf is clearest for reading the criteria.

An International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented.

The Canadian Consensus Criteria were used as a starting point, but the six-month waiting period before diagnosis is no longer required. There is a list of criteria for M.E. as well as a definition for "Atypical Myalgic Encephalomyelitis": the patient meets the criteria for "post-exertional neuroimmune exhaustion" but has two or less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases. 2011-07

Voices Unlimited: raising money for M.E. Research this year.
From their website: "We are delighted to report that our recent gigs at The Swan Theatre, Worcester, raised in excess of £1,500 for our charities for 2011 - we are raising money for M.E research this year (last year it was the Breast Cancer Unit in Worcester hospital). We are just thrilled - thanks to everyone who bought tickets to the sell-out shows!"
PACE trial
Information and links grouped together further below.

"Betty calls it a day" - Betty Hughes steps down from the Pershore Council, - but she continues as our President.
From the Evesham Observer. - The newspaper article has been archived: to view it go to http://osnpages.co.uk/osadweb/index.aspx and search for 'Betty Hughes' - the article is dated May 20 2011.

A COMMUNITY figurehead and popular town councillor is taking a well-earned rest from her council duties after almost three decades of service.
Betty Hughes MBE stood down last Thursday (May 12) after 28 years as a town councillor including a two year stint as Mayor.

Mrs Hughes was the first ever woman to become Pershore Mayor when she took on the role in 1991 and she said it caused quite a stir in the town.
"I remember it being quite controversial because it was something the town had not seen before but it was certainly something I enjoyed doing," she said.
"It's time for me to move on now but I'd like to thank everyone for the support they have given me during my term as a councillor over the last 28 years. It has been much appreciated."
As recognition for her outstanding service to the town council Mrs Hughes was given a stylish radio as councillors bid farewell to her last week.
"They asked me if there was anything I wanted and as my old radio had broken recently I thought why not ask for something I needed. It's lovely and I'm very grateful to the town council for the gift," she added.

Outside of her council duties Mrs Hughes has been involved and still is involved with a number of other organisations including the Pershore Division of St John Ambulance where she is divisional president and the Worcestershire M.E. Support Group where she is serving as honorary president.

She is also a life member of the Friends of Pershore Abbey, president of the Avonvale Organ Club, associate member of Cherry Orchard First School governors association and involved with the Friends of St Marys Church in Wick, Friends of Pershore Baptist Church and Friends of Pershore Hospital.

Ann Dobbins, Pershore Town Clerk, said she would be missed in meetings.
"Betty was a well-respected member of the council who always had the good of the town at heart," she added.
"She worked hard on the council and her thoughtful contributions to debates will be missed." 2011-05
Shropshire ME Group Annual Conference -
Saturday 7 May : Shrewsbury
'DO TREATMENTS FOR ME/CFS WORK?'
Main Speaker - Jane Colby Executive Director,
the Young ME Sufferers Trust (Tymes Trust)
The conference is from 2.00pm - 4.00pm at the Memorial Hall, Bayston Hill, Shrewsbury, Shropshire. The centre is about 3 miles south of Shrewsbury on the A49. (2011.04)
PACE Trial
(Pacing, graded Activity & Cognitive behaviour therapy: a randomised Evaluation.)
A 52 week study of 641 participants who met the Oxford criteria for chronic fatigue syndrome (of which 427 met international criteria for chronic fatigue syndrome and 329 met London criteria for myalgic encephalomyelitis)..

From www.mecfsforums.com wiki site

Results of the PACE Trial
Rejected Letters to the Lancet (20.05.11)

Professor Sharpe and Richard Horton talk about the PACE trial
on The Health Report - ABC National Radio, Australia: 18 April 2011. With transcript, streaming and download of audio. (Professor Sharpe - co-author of the study; Richard Horton - editor of The Lancet.)
ME Association page about these interviews. (2011.04)

Full text with tables and webappendix.
Plus pdf version available.

Note: from above link -
This document may be redistributed and reused, subject to certain conditions.

This document was posted here by permission of the publisher. At the time of the deposit, it included all changes made during peer review, copy editing, and publishing. The U. S. National Library of Medicine is responsible for all links within the document and for incorporating any publisher-supplied amendments or retractions issued subsequently. The published journal article, guaranteed to be such by Elsevier, is available for free, on ScienceDirect, at: http://dx.crossref.org/10.1016/S0140-6736(11)60096-2    (2011.04)

ME Association: Press statement about the results of the PACE study by Tony Britton on February 18, 2011
MRC (Medical Research Council): UK’s largest CFS/ME trial confirms safe and effective treatments for patients
Comments on PACE trial: Biomed Central
Trial Information from www.pacetrial.org

Complete Lancet PACE trial paper (excluding tables of results)
on Co-Cure - Extracts below:

SMC - Standardised specialist medical care.  APT - Adaptive pacing therapy.
CBT - Cognitive behaviour therapy.  GET - Graded exercise therapy.

"We recruited 641 eligible patients.  [Regarding] mean fatigue scores & mean physical function scores …subgroup analysis of 427 participants meeting international criteria for chronic fatigue syndrome and 329 participants meeting London criteria for myalgic encephalomyelitis yielded equivalent results."

Results
"Primary Outcomes" (fatigue & physical function rated on questionnaires by participants):
"In the final adjusted models, participants had less fatigue and better physical function after CBT and GET than they did after APT or SMC alone. Outcomes after APT were no better than they were after SMC. Participant subgroups meeting international criteria for chronic fatigue syndrome, London criteria for myalgic encephalomyelitis, and depressive disorder criteria did not differ in the pattern of treatment effects."

"16% of participants in the APT group were within normal ranges [as defined by the trial] for both primary outcomes at 52 weeks, compared with 30% of participants for CBT, 28% of participants for GET, and 15% of participants for SMC. More participants were within normal ranges after CBT than APT or SMC and more were within normal ranges with GET compared with APT or SMC; APT did not differ from SMC."

"At 52 weeks, more patients rated themselves as much better or very much better in overall health after CBT and GET than did after APT and SMC. A minority (≤9% in every group) rated themselves as much worse or very much worse, which did not differ between groups."

"Secondary outcomes. "
"At 52 weeks, participants in the CBT and GET groups had better outcomes than did participants in the APT and SMC groups for work and social adjustment scores, sleep disturbance, and depression (with the one exception that GET was no different from APT for depression). Anxiety was lower after CBT and GET than it was after SMC, but not than after APT. There were fewer chronic fatigue syndrome symptoms after CBT than there were after SMC. Poor concentration and memory did not differ between groups. Postexertional malaise was lower after CBT and GET than it was after APT and SMC. 6-min walking distances were greater after GET than they were APT and SMC, but were no different after CBT compared with APT and SMC. There were no differences in any secondary outcomes between APT and SMC groups."

"Discussion" (Conclusion)
"When added to SMC, CBT and GET had greater success in reducing fatigue and improving physical function than did APT or SMC alone. APT was no better than was SMC alone. Our findings were much the same for participants meeting the different diagnostic criteria for chronic fatigue syndrome and for myalgic encephalomyelitis, for those with depressive disorder, and after allowing for clustering effects. Other secondary outcomes showed a very similar pattern. There were no important differences in safety outcomes between treatment options.

Mean differences between groups on primary outcomes almost always exceeded predefined clinically useful differences for CBT and GET when compared with APT and SMC. In all comparisons of the proportions of participants who had either improved or were within normal ranges for these outcomes, CBT and GET did better than did APT or SMC alone. No more than 30% of participants were within normal ranges for both outcomes and only 41% rated themselves as much better or very much better in their overall health. We suggest that these findings show that either CBT or GET, when added to SMC, is an effective treatment for chronic fatigue syndrome, and that the size of this effect is moderate.

Our conclusions are supported by secondary outcomes, as both CBT and GET provided greater improvements than did APT and SMC for most outcomes. The objective walking test favoured GET over CBT, whereas CBT provided the largest reduction in depression. The comparatively greater reduction in postexertional malaise with both CBT and GET compared with the other two treatments is notable, since the risk of exacerbation of this symptom is commonly given as a reason to avoid treatments such as GET. The 47% prevalence of mood and anxiety disorders at baseline was much the same as that noted in previous trials in secondary care (38–56%). [see the study "Psychiatric misdiagnoses ..."] The equivalent use of antidepressants in the treatment groups implies that the differences in outcomes are unlikely to be attributable to these drugs. "
(Edited to remove references to tables and statistical terms.)
Psychiatric misdiagnoses in patients with chronic fatigue syndrome - Tara Lawn, Praveen Kumar, Bernice Knight, Michael Sharpe and Peter D White - on behalf of the PACE trial management group (listed in protocol reference) - an ancillary study of the PACE trial
Pershore fundraising event

The Group received a magnificent £120 from one of our Pershore members who held an Open Day fundraising event at her home to help finance the room hire at Pershore Town Hall.

It was marvellous to hear of this initiative.  If you feel you could organise a similar event (or know someone who can) and would like some tips, please contact this member via the group worcsmegroup@yahoo.co.uk(02.2011)