We meet socially in many locations throughout the county.
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings - please join us at whichever suits you.  Join us for a bite to eat, or just a cuppa and chat.
Our 2019 Handout gives all dates and venues for this year .

The current ME Association (MEA) Monthly Survey asks - “To what extent has loneliness and social isolation become a consequence of having ME?”  Scroll down on the MEA home page to take part.

The ME Association and Action for ME discuss loneliness during Loneliness Awareness Week.

• Loneliness, ME and the benefit of local support groups by Bill Clayton | 21 June 2019.
• How can I get connected this Loneliness Awareness Week? June 20, 2019.

 
The NHS give Loneliness and Isolation advice, both locally and nationally.

• Worcestershire Health and Care NHS Trust.
• NHS England.

Employment Support Allowance (ESA) and Personal Independence Payment (PIP) will be discussed this Friday, 14 June. The ME Association (MEA) would like to hear of specific problems, within the past year or so.
From the MEA we hear that Dr Charles Shepherd, Hon. Medical Adviser, ME Association, and the Countess of Mar, Chair of Forward-ME, will be attending.  See the MEA article for explanations of how to respond to the MEA with your recent experiences.

Inform your Worcestershire MP of your situation -

Carol Monaghan MP has secured the meeting on Friday with Justin Tomlinson -  Minister for Disabled People, Health and Work  - to discuss problems relating to all aspects of claims and medical assessments for state benefits.  This week’s Benefits Discussions follows the House of Commons chamber “Appropriate ME Treatment” Debate in January. 

See “Commons M.E. Debate, 24 January. Transcripts, YouTube and Reports” on our group blog.

International M.E./CFS & FMS Awareness Day. 
In a recent letter, Robin Walker Worcester MP, tells us -
“I welcome ME Awareness Week, and I hope it helps more people understand this condition, which can be so frustrating and distressing for many.”

May 12 - #MillionsMissing Global Virtual Meetup
#MillionsMissing is a global campaign for ME health equality.  No matter where in the world you are, throughout the day on May 12th, you will be able to call into a "virtual room" where you can connect with other activists.

Events in Worcestershire and nearby during May:
• Wednesday 8 May,
ME/CFS NHS Service M.E. Awareness Week Drop-In
anytime between 1.00 and 3.00 pm,  at the Lyppard Hub (Ankerage Green, Worcester, WR4 0DZ)
• Thursday 9 May,
Worcestershire M.E. Social Group Afternoon Café Meeting -
from 2.30 pm to 4.00 pm, at the Olive Grove Café, David's Garden Centre by Cherry Lane, Ash Lane, Worcester, WR3 8TB
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome.  Join us for a bite to eat, or just a cuppa and chat.
• Friday 10 May  
from 12 noon - 3pm, at St Philip's Cathedral Square, Birmingham, B3 2QB
People from Worcestershire are welcome at the Solihull & South Birmingham ME Support Group’s third #MILLIONS MISSING BIRMINGHAM.  Full information from Solihull & South Birmingham ME Support Group and MEACTION.
• Tuesday 14 May
Walsall Fibro & M.E. Link Awareness Evening.  From 7.00 - 9.00 pm.
• Tuesday 21 May
Worcestershire M.E. Social Group Lunch
from 12.30 pm to 2.00 pm, at The Mayfly Restaurant, Cob House Fisheries, Worcester Road, Wichenford, Worcester, WR6 6YE
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome.  Join us for a bite to eat, or just a cuppa and chat. 
• Wednesday 29 May
Worcestershire NHS Chronic Fatigue Syndrome/M.E. Service Recovery And Management (RAM) Group.

The ME Association ask -  How will you Go Blue 4 M.E.?, and, explain  ME is REAL! Why ME Awareness Week matters more than ever…

M.E. Research UK tell us about ‘Walk for ME 2019’
The aim of Walk for ME is to get as many people as possible, especially the family and friends of those affected by ME, to do a sponsored walk, run, swim or ride of whatever length they feel comfortable with.  There is no minimum distance, no targets and, although it runs principally through ME Awareness Week (6th to 12th May 2019), no set dates. 

This year, 2019, marks the 27th anniversary of International May 12th Awareness Day.  The International Awareness Day for the spectrum of illnesses called Chronic Immunological and Neurological Diseases (CIND).

ME Awareness Day - The Birthday of Florence Nightingale
M.E. Awareness Week was established by patient advocates and is focused on May 12th, the birthday of Florence Nightingale, who was believed to have suffered with M.E.

Worcestershire GPs’ CFS/ME referral protocol [link goes to word document] is now available on the Worcestershire Health & Care NHS Trust website.  The referral protocol gives details of symptomology and tests that should be done prior to patients being seen by the ME/CFS Consultants, Dr Mirella Ling or Dr Mark Roberts, Specialist Consultants in Infectious Diseases, at Worcestershire Acute Hospital NHS Trust.  Dr Mirella Ling and Dr Mark Roberts, the Lead Clinicians of the Worcestershire Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) Local Multi-Disciplinary Team (LMDT), hold ME/CFS Clinics at Kidderminster Hospital.


The ‘Information for GPs’ explains that a timely diagnosis can make a significant difference to a patient’s prognosis and experience of living with this condition.  This webpage includes an ‘Introductory Guide to Fatigue Management’ 12 page leaflet which provides information for people who are experiencing chronic fatigue, and explains there are approximately 40 conditions that can cause fatigue.  The leaflet gives details of some basic management strategies that may be of use, regardless of diagnosis.

The CFS/ME LMDT’s NICE Guidelines information has been updated -
Although NICE guidelines are currently being reviewed, they currently suggest that the most effective treatments are Cognitive Behavioural Therapy (CBT) to help improve the way you feel about the condition, and Graded Exercise Therapy (GET) to gradually build up exercise tolerance and improve fatigue levels. The principles of these therapies underpin the treatment provided by the Worcestershire CFS/ME Service.

The CFS/ME LMDT Recovery And Management (RAM) Group Calendar has been updated.  The Recovery And Management group is run on a bimonthly basis, and is open to anybody who has previously received treatment from the CFS/ME LMDT service and has now been discharged.
All sessions will be run by staff members of the Worcestershire CFS/ME service and are held on the last Wednesday of every other month at Ability House, St John's Campus, Henwick Grove, Worcester WR2 6AJ.
Please note that these are provisional topics are subject to change. Please contact 01684 612671 to confirm prior to attending.

• Coping with frustration, anger and other difficult feelings - 29th May 2019 2pm-4pm Ability House, Worcester 
• Mindfulness - 31st July 2019  2pm-4pm Ability House, Worcester 
• Overcoming cognitive problems - 25th September 2019  2pm-4pm Ability House, Worcester 
• ‘Bring and share’ resources you have found helpful (books, courses, DVD’s etc) - 27th November 2019  2pm-4pm Ability House, Worcester 

Worcestershire M.E. Social Group’s website includes NHS Worcestershire Chronic Fatigue Syndrome/M.E. Service information.

Social Group Lunch - Wednesday 24 April, from 12.30 pm, St Peters Garden Centre.
Please be aware, of the roadworks near the St Peters Garden Centre.    Norton Road, from the Worcester Southern Link Road to Norton is closed.   Search for 'WR5 2NY' on the Worcestershire roadworks website to find diversion routes.

All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings.  Join us for a bite to eat, or just a cuppa and chat. 

We meet socially in many locations throughout the county.

Sadly, we’ve heard from Pauline Ovenden’s daughter, Heather, that Pauline has passed away.  Pauline Ovenden, was President of Herefordshire ME/CFS/FMS Group.
 
Pauline was a survivor from the Royal Free Hospital outbreak in 1955.   She was highly articulate, utterly dedicated to the process of informing the public better about ME; and as a Royal Free veteran she carried more authority than the rest of us.  In November 2004 the Hereford Support Group included Pauline’s “Personal Account of the outbreak of ME at the Royal Free Hospital” in their newsletter. 

This was then included in the Worcestershire December 2004 newsletter.
Pauline was a founder member of the Herefordshire ME/CFS/FMS Group 33 years ago, and part of a team that promoted a set of guidelines to local health authorities on ME.  Also, she represented the Herefordshire ME/CFS/FMS Group at NHS Worcestershire and Herefordshire ME/CFS Local Multi-Disciplinary Team (LMDT) steering group meetings, and the West Midlands ME Groups Consortium.
 
After the publication of the Chief Medical Officers report on M.E/C.F.S. in January 2002, the Guardian described how in 1955, Pauline was working at the Royal Free hospital in London when large numbers of staff were felled by a mysterious illness.
 
In 2007 Pauline was awarded the Herefordshire Voluntary Action ‘Volunteer of the Year’ Award in appreciation for her work for sufferers nationally and locally, and on a personal basis.  This was publicised by the ME Association.
 
We understand that Pauline’s funeral is on Friday 1st March at Hereford crematorium, 3pm.

You can read the Appropriate ME Treatment Debate transcription in Hansard, watch the full debate on YouTube, and see reports information below.

The #MEAction Network detailed report -
‘Historic Parliamentary Debate Shaped by People with ME’ highlighted that Stephen Pound MP made an especially rousing contribution to the proceedings, declaring that:
“This House recognises the reality of your condition. This House will not sit idly by while you suffer. This House will not ignore you. This House will devote its intelligence and its resources to research, ultimately to resolve and to cure, this terrible condition (…). ME sufferers the world over must know that this House and this nation is finally speaking for you.”

The #MEAction Network told us “Over 40 MPs from across the political divide sat in the House of Commons to debate a motion on myalgic encephalomyelitis (ME), with 27 making impassioned contributions on behalf of their constituents.” and gave us links to all MPs who spoke.

The ME Association’s (MEA) press release highlighted - ‘Parliamentary Debate: Kids being taken into care by medics who refuse to believe ME is real’. 
The MEA press release states - ‘MP Carol Monaghan, who brought today’s motion, led calls for more funding for research and better medical training to help support patients.’  MP Carol Monaghan said - “Leading up to this debate, I have been asked repeatedly what I hope to achieve. Ultimately what I want, and what the ME community wants, is better treatment and care for those with ME.” 
The MEA report includes ‘Comment on the Debate’ by Dr Charles Shepherd, Hon. Medical Adviser, M.E. Association; plus a list of MPs who were present.  Also it draws attention to child protection proceedings, suspension of controversial therapies, improving medical education, and research funding.

Action for ME (AfME) pointed out that they will be working with Forward ME to share the results of its survey for NICE on CBT and GET with MPs, once the report has been published. 

Please share your experiences.  See our blog earlier this month - NICE CBT and GET Patient Survey - Please complete by 31 January. 

ME Research UK (MERUK) gave a summary and commentary on ‘Commons Debate 24 January 2019’.  The MERUK report explained that “regrettably, pressure of time meant that MPs were asked to limit their speeches progressively from 4 to 3 and then to 2 minutes apiece and so much useful comment was probably left unsaid and the opportunity to make specific points lost. Nevertheless, 27 backbench MPs had the opportunity to contribute to this important debate.”

Prior to the debate, MERUK gave a ‘Background to House of Commons Debate’ article, explaining the research situation.  

M.E. Parliamentary Debate, in the House of Commons, Thursday, 24 January, 2.00pm. (Motion quoted further below.)

All Worcestershire MPs are encouraged to attend this important debate secured by Carol Monaghan MP.  Write to your MP. 

Robin Walker, MP for Worcester, said “I believe that research into this area is vital”, in a letter following the M.E. debate held in June 2018.

On 24 January, biomedical research will be amongst a number of major issues and concerns raised. 

These are referred to in the motion:
“That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of M.E., supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of M.E. and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting M.E. families to unjustified child protection procedures.”

These issues and concerns are described in more detail in the briefing document that has been prepared and supported by national charities, who are members of the Forward ME group of charities.

The ME Association, and Action for ME give full information on this week’s debate. 

The June 2018 debate is available to watch on Youtube, and you can read the full Hansard transcript.

Here is the Hansard information following the debate -
Recognition of Fibromyalgia as a Disability and Fibromyalgia: Diagnosis.
 
Video of debate on parliamentlive.tv (available for download or as audio only).

And, here is the information available prior to the debate -
House of Commons Library: Recognition of fibromyalgia as a disability
"This pack has been prepared ahead of the debate to be held in Westminster Hall on Tuesday 15 January 2019 from 9.30-11am on recognition of fibromyalgia as a disability. The debate will be opened by Toby Perkins MP."

Download the full report Commons Library debate pack - Recognition of fibromyalgia as a disability (PDF, 257.88 KB)

Have you received or been offered Cognitive Behavioural Therapy (CBT) and/or Graded Exercise Therapy (GET) in the UK since 2007?

The Forward ME group of charities has launched a survey, having been asked by the National Institute of Health and Care Excellence (NICE) to gather evidence and experiences.

ME Research UK (MERUK) CEO, Simon Phillips, welcomed the launch of the survey, adding:
As one of the funders of the CBT and GET Patient Survey and as an active member of the Forward-ME Group, ME Research UK encourages all those who have undertaken or were offered CBT or GET in the UK since 2007 to take this opportunity to contribute before the end of January 2019. This will allow Forward-ME to submit the results to NICE for them to use as part of their review of the current Guideline. We will await the results of Oxford Brookes University’s analysis of the results with keen interest.

The ME Association (MEA) explain the deadline:
The deadline for completing the questionnaire is the 31st January 2019, to meet the very narrow time frame set out by NICE. 
Unfortunately, this also means that Forward ME do not have the time or capacity to send out/accept paper copies. We will make it very clear to NICE when we submit the report that those unable to complete the survey online, including many severely affected people, have not been able to take part.
The survey is however designed to allow a carer, parent or another person to fill it in on behalf of someone else if they are unable to do this themselves.

Join in discussions on social media groups.

Information from the Worcestershire NHS CFS/ME Local Multi-Disciplinary Team (LMDT): Nice guidelines (2007) suggest that the most effective treatments are Cognitive Behavioural Therapy (CBT) to help improve the way you feel about the condition, and Graded Exercise Therapy (GET) to gradually build up exercise tolerance and improve fatigue levels. The principles of these therapies underpin the treatment provided by the Worcestershire CFS/ME Service.