Worcestershire M.E. Social Group
  • Home
  • About Us
    • Contact Form
  • About M.E.
    • NHS in Worcestershire
  • Meetings
  • News Blog
    • View Blog Categories
    • News feeds
    • News Archive
  • Links
  • Search
  • Benefits

Understanding Myalgic Encephalomyelitis (ME) - also known as ME/CFS. (3)

27/11/2019

 
The Worcestershire ME Support Group’s "Symptoms of M.E./CFS" gives symptoms taken from ‘Living with M.E.’ by Dr Charles Shepherd, ‘M.E. - How to Live with It’ by Dr Anne MacIntyre, and ‘The Disease of a Thousand Names’ by Dr David Bell.  The percentages shown represent M.E. patients displaying that particular symptom.  Many people with a diagnosis of ME, and/or ME/CFS, find this helpful when explaining their symptoms to their doctor.
Symptoms Of CFS/ME (pdf)
File Size: 422 kb
File Type: pdf
Download File

Worcestershire ME Support Group members' helpful and unhelpful responses.
The Worcestershire ME Support Group received members’ helpful and unhelpful responses back in 2003/2004. 
Members' helpful and unhelpful responses.
File Size: 815 kb
File Type: pdf
Download File

This information may still be helpful for people trying to understand ME/CFS, and how some people can be helped.  The information is taken from completed membership questionnaires in the year ending August 2004.

There is a Group Disclaimer on the last page -
"Views and opinions expressed in this document are the personal beliefs of the individual contributor.  They may not represent the feelings of all members, and are not necessarily those of the Worcestershire M.E. Support Group.

The committee and Worcestershire M.E. Support Group do not endorse or recommend any particular treatment, therapy or practitioner.  Practitioners and treatments mentioned are for information only.  Any treatment, tests or remedies mentioned may be tried at your own risk, but preferably after consultation with your GP."

The Group on Scientific Research into Myalgic Encephalomyelitis (GRSME) - Chaired by Dr Ian Gibson MP for Norwich North from 1997 to 2009, and Vice Chair, Dr Richard Taylor, MP for Wyre Forest from 2001 to 2010.

In 2006 the Worcestershire ME Support Group’s Presentation at the Gibson Enquiry included a reference to the members’ helpful and unhelpful responses.

"A couple of years ago our Group asked what members found helpful and what had been unhelpful.  The replies showed how much money and time is used going from one complementary therapy to another trying to find something that will relieve some of their many symptoms.  They also try various supplements without knowing which would be of benefit to them.  All this is costing people hundreds of pounds, and yet the majority are living on a very reduced income, or benefits."
 
Full presentation - http://www.erythos.com/gibsonenquiry/PresDocs.html

Understanding Myalgic Encephalomyelitis (ME) - also known as ME/CFS. (2)

16/11/2019

 
Warwick Davis, former Support Group Vice-Chair, who now organises the Worcestershire M.E. Social Group’s Lunches throughout the County, has been spreading the word. 

Warwick tells us -
“For a number of years I have been very fortunate to have had a one to one with a Third year student doctor.  My surgery is a teaching facility for the QE University Hospital, Birmingham, and one of the students was allocated to me for a case study - a long term illness, in this case ME.  My experience has cost me 30 years of my life.

This year things changed a little for I spoke to the group as whole for an hour.  Feed-back has once again been positive and they continued the discussion with the Doctor from the practice, who had sat in on the talk.  One student is now continuing with my case.

I would like to thank the ME Association for providing me with handouts for distribution to the students and the Doctor.”

Has your doctor received a copy of the MEA (ME Association) Purple Book "ME Association Clinical and Research Guide?" See also our previous "Understanding Myalgic Encephalomyelitis (ME)" blog, dated 6 November.

Understanding Myalgic Encephalomyelitis (ME) - also known as ME/CFS.

6/11/2019

 

Four recent publications -
 "Supporting you and your patients with ME/CFS" - Forward-ME's Briefing for GPs.
"A Community … and ME" - Invest in ME Research’s new 42 page booklet.
"Worcestershire GPs’ CFS/ME referral protocol" - highlighted on our blog, in April this year.
"ME Association Clinical and Research Guide" - The Purple Book, 2019 edition.

The following gives more information about these publications  -

• Help your GP understand M.E. -
"Supporting you and your patients with ME/CFS" - Forward-ME's Briefing for GPs.
Copies of the 4 page Forward-ME Briefing "Supporting you and your patients with ME/CFS" were distributed at the Royal College of GPs Conference in Liverpool last month.  During the conference, Action for ME and the ME Association advised GPs on how they can best help people with M.E./CFS.

• Help everyone understand M.E.-
"A Community … and ME" - Invest in ME's 42 page booklet. 
In order to raise awareness of how ME affects a community, Invest in ME Research looks at some figures in society and views their perception of the disease and the problems they are confronted with.   The new downloadable booklet, available to share.

• Help your Worcestershire GP understand M.E.. -
"Worcestershire GPs’ CFS/ME referral protocol" - highlighted on the Worcestershire ME Social Group’s blog in April this year.  Also highlighted on the Group’s handout.

• Help your healthcare professional understand M.E. -
"ME Association Clinical and Research Guide".  Free copies of The Purple Book - 2019 edition are available for health professionals.  The MEA again offer free copies of the 214 page print version to GPs, NHS consultants and other healthcare professionals in the UK.   Highlighted on the Group’s handout.

• Help your Parliamentary Candidates understand M.E. -
If you see your local candidates or their representatives, tell them about this blog, the Worcestershire ME Social Group’s website, and our social gatherings.  Worcestershire MPs' contact information will be updated on the Social Group’s website after the General Election.

    Group Blog

    • News
    • AfME/ MEA/ Government news
    • Benefits News

    Archives

    March 2023
    January 2023
    November 2022
    October 2022
    July 2022
    June 2022
    May 2022
    April 2022
    March 2022
    February 2022
    January 2022
    December 2021
    November 2021
    October 2021
    September 2021
    August 2021
    July 2021
    June 2021
    May 2021
    April 2021
    March 2021
    February 2021
    January 2021
    December 2020
    November 2020
    October 2020
    September 2020
    August 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020
    February 2020
    January 2020
    December 2019
    November 2019
    October 2019
    June 2019
    April 2019
    February 2019
    January 2019
    December 2018
    November 2018
    September 2018
    August 2018
    June 2018
    May 2018
    April 2018
    March 2018
    February 2018
    January 2018
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    May 2017
    April 2017
    February 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    May 2015
    April 2015
    March 2015
    January 2015
    January 2013
    December 2012
    November 2012
    January 2008
    December 2007
    June 2004

    Categories

    All
    25% M.E. Group
    Action For ME
    A.P.P.G
    B.B.C
    Benefits
    Carers
    Children
    Coronavirus (COVID 19)
    Fibromyalgia
    Forward ME
    Fundraising
    Government U.K.
    Hereford
    Local News
    Malvern
    #MEAction
    M.E. Association
    Medical Research Council
    Meetings
    MERUK
    MP
    National Newspapers
    N.H.S.
    N.I.C.E.
    Parliament U.K.
    Post COVID Syndrome (Long COVID)
    Research
    Sleep
    The ME Trust
    Tymes Trust
    Worcester City Council
    Worcestershire
    Worcestershire County Council
    Worcestershire M.E. Social Group
    Worcestershire M.E. Support Group

    RSS Feed

Powered by Create your own unique website with customizable templates.