Welcome to July and the start of School holidays.

If you are interested in helping with the creation of the monthly Facebook blog, please email Kim (Secretary) at: kim@dgmefm.org.uk. 😊

Articles / Blogs

  • One of the biggest myths about chronic fatigue syndrome just got destroyed in this article which suggests a faulty cell receptor.
  • Could there be a biomarker for ME/CFS?, check out this article.
  • The article ‘Brit scientist could be about to CURE multiple sclerosis and provide hope for millions’ was shared as potentially could, in time, cure other conditions.  The article explains how they are not using any drugs but instead simply switching on the body’s own systems of self-tolerance and repair, which in addition means there aren’t any side effects.  They also report that 2020 to start clinical trials is a bit ambitious.  The article however, makes no reference to ME, CFS or Fibromyalgia.
  • The article ‘The Evolution of a Chronic Fatigue Syndrome (ME/CFS) Researcher? CBT Proponent Calls for More Herpesvirus Research’ was shared.
  • An article on Lyme disease was shared, suggesting how many patients are fobbed off with incorrect diagnoses like anaemia, ME, chronic fatigue syndrome and fibromyalgia.
  • The link to the updated ME Association guide to completing your ESA application was shared.  It costs £3 and you don’t have to be a member of the ME Association to purchase it.
  • The article ‘ME Association reaction: BBC Radio 4 File on 4 – Children with M.E. | 27 June 2017’ was shared.
  • The NICE guidelines published in August 2007 covering Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management, was shared: link.  A check of whether the guidelines needs updated with a plan to publish findings in summer 2017 is in progress, you can also register as a stakeholder to be informed about the decision on the website.
  • The ME Association Review GETSET which they say fails to demonstrate it can significantly improve physical function: article.
  • 93% of Patients Prefer Cannabis Over Opioids For Managing Pain, According to New Study: article.
  • The electronic version of ME Research UK Spring 2017 Breakthrough magazine is now online: link.

Members posts

  • A link between hypermobilty and Fibromyalgia was shared.
  • The benefits of daith piercing was shared for migraine relieve: check out what Wikipedia says about this.
  • GP recommendations was discussed.
  • One of our members made the group aware that the movie “What About ME?” was now available to Amazon prime members.  The movie ‘is an expose inside the dramatic search for a cure for Myalgic Encephalopathy (ME), also known as Chronic Fatigue Syndrome (CFS).  17 million people around the world suffer from ME/CFS which, unbelievably, has until now, been treated as a mystery illness or even as a psychological disorder by the medical community.’
  • One of our members shared their recent diagnosis of osteoarthritis.  It was noted that a number of members put symptoms down to their condition.  It was also noted that when raised with GPs that they sometimes put symptom down to ‘wear and tear or old age’.
  • Increased fatigue due to Hay Fever was discussed.
  • The benefits of taking magnesium, vitamin D and Q10 was discussed.

Members feedback questionnaire

Our members feedback questionnaire is due to be sent out July/ August.  If you get our regular newsletter you will already be a member, if not, please consider joining as a full member.  Details on how to join are available at: link  It costs nothing to be a member and you get our regular newsletters.

Feedback aims are;

  1. To be able to target our energy, time and resources on the things that matter most to you;
  2. Make informed funding applications; and
  3. Speak confidently on members behalf with Health and other organisations about the effect of ME/CFS and FM.

What matters to you, matters to us so completion and return of this feedback questionnaire will help the Network Committee focus their limited resources where it matters.

Take care and gentle hugs to you all.

June 2017 Facebook Blog

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