15,180 people signed the ME Association (MEA) national petition, addressed to Sir Andrew Dillon, Chief Executive, NICE, calling for a complete review of the NICE guideline for ME/CFS.  This included many Worcestershire people who signed, many of whom gave their comments.
The 2007 NICE Clinical Guideline has been checked by NICE for the need for an update and the NICE CFS/ME Guideline Registered Stakeholders were invited to comment on NICE’s surveillance consultation - they were given 14 days, from 10 - 24 July to voice their concerns.

LocalME (an online forum for local ME group contacts across the UK) responded - they had managed to receive an extension until 31 July.  The MEA announced Stakeholder submissions from Action for ME (AfME), Forward-ME, Invest in ME Research, LocalME, the MEA, Tymes Trust, and many more.
 
National Petition -
ME Association petition represents biggest expression of no confidence in a NICE guideline ever recorded | 26 July 2017
www.meassociation.org.uk/2017/07/me-association-petition-represents-biggest-expression-of-no-confidence-in-a-nice-guideline-ever-recorded-26-july-2017/
 
Comments - 
www.meassociation.org.uk/wp-content/uploads/MEA-Petition-Comments-24.07.17-1.pdf
 
NICE surveillance consultation -
www.nice.org.uk/guidance/CG53/documents/surveillance-review-proposal
 
Stakeholder submissions -
www.meassociation.org.uk/2017/07/the-nice-guideline-consultation-uk-stakeholder-submissions-27-july-2017/
 
LocalME -
see attached file below

This is your opportunity to voice your concerns. 

The ME Association has today [10 July] launched a national petition that aims to demonstrate to NICE (National Institute for Health and Care Excellence) that people with CFS/ME are not happy with the current guideline or the way in which the current review is being conducted.
Action for ME are also directing people to the MEA national petition.

Please sign the petition, add your comments if you are able to, and share/forward this blog.

• ME Association Petition: The NICE guideline for CFS/ME is not fit for purpose… | 10 July 2017
• Action for M.E. to NICE: guideline must be reviewed 10 July 10 2017
  

During the summer, Worcestershire ME Social Group Afternoon Teas continue.  Also, the Social Group regularly has group lunches at locations throughout the county.

For an afternoon cuppa and chat - join us between 2.30 pm and 4.00 pm at David’s Nurseries, Worcester, on Thursday 8 June; 
Webbs of Wychbold, Droitwich on Thursday 13 July;  and
St Peters Garden Centre, Norton, Worcester on Thursday, 10 August.

Join us for lunch, or a cuppa and a chat, from 12.30 pm, at Rowberry’s Garden Centre, Lower Chaddesley Corbett on 22 June;  and Barnett Hill Garden Centre on 25 July.  Further dates and full details of venues on our website.

All people affected by M.E. (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome), PVFS (Post Viral Fatigue Syndrome), and FMS (Fibromyalgia Syndrome), will be welcomed at these get togethers. 

This Social Group’s website also gives news, blogs and useful links.

Whole independent re-analysis of the PACE Trial recovery paper -
Now available outside of paywall.

“Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy?  A critical commentary and preliminary re-analysis of the PACE trial” 

Conclusion - “The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.”

Explanatory PACE Trial recovery paper articles
(Pacing, Activity, and Cognitive behavioural therapy, a randomised Evaluation) -
‘How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma’
‘Yet more research shows chronic fatigue syndrome is real. When will health services catch up?’
‘Getting it wrong on Chronic Fatigue Syndrome’
‘Call for retraction of PACE publication’

Our first Afternoon Tea will be Thursday 11 May, during M.E. Awareness Week.  Join us for an afternoon cuppa and chat, on Thursday 11 May, from 2.30 to 4.00 pm, at the Apple Barn Restaurant at Evesham Garden Centre, The Valley, Evesham. 

Help raise awareness during ME Awareness Week (May 8 to 14) by Going Blue in Evesham. 

Lunches continue - please see meetings page for all Summer Teas, and Lunches throughout the year.

The Walsall Fibro and ME Link and Solihull & South Birmingham ME Support Group are organising the Birmingham Millions Missing Protest, taking place on Friday 12 May at St Philip’s Cathedral Square, Colmore Row, B3 2QB, from 1.00 pm - 5.00 pm.

People from Worcestershire are welcome at this event, which marks the 25th International ME Awareness Day.

Anyone from Worcestershire who would like to attend is most welcome for as short or as long a time as they can manage - bring family and friends to swell the numbers too.  Bring shoes, labelled ‘millionsmissing’.  Also, anyone who would like to send shoes and a message, please email for further details.

Updates appear on the event’s facebook.

• Facebook Group: Millions Missing Birmingham UK (need to login)
• Facebook Event: Millions Missing - Birmingham (don't need to login to view)
  
  
• Evening Standard report of the 2016 Millions Missing Protest

Worcestershire Health & Care NHS Trust Survey

The NHS are asking people for their views on how the health and care services could look in the future.  All people in Worcestershire are encouraged to become involved - just go to this page - www.hacw.nhs.uk/yourconversation  and click on their ‘online survey’. 

Marina Townend, Specialist Occupational Therapist/ Team Lead of the Worcestershire CFS/ME service, thanks us for raising awareness on our website. The Worcestershire CFS/ME service is one of the services provided by Worcestershire Health & Care NHS Trust.

Further information about the plans is on the website.

Deadline for the health and care services Online Survey is Tuesday, 28 February 2017.
 
 
The Future of Acute Hospital Services in Worcestershire Survey

This consultation is about the future of services provided at Worcestershire’s largest NHS hospitals - the Alexandra Hospital, Kidderminster Hospital and the Worcestershire Royal Hospital. 

Everyone in Worcestershire is encouraged to read the Consultation Document and complete the Online Questionnaire/Survey.

Further information about the plans and public meetings and events are on the website.

Deadline for the Acute Hospital Services Online Survey is March 30th 2017.

Action for ME’s ‘Christmas 2016’ InterAction magazine throws a spotlight on our group.