1) Treatment Survey
After seven gruelling years, the treatment survey has finally been compiled. We have had 53 surveys completed. The survey shows the treatments which sufferers have found the most helpful, as well as those which have worsened their condition, and where to order the helpful treatments from. Please go to the SURVEY page for the full downloadable documents. In summary, the following treatments have helped sufferers the most (no.1 is the highest percentage of those helped):
- Various alterations to diet
- Magnesium (see warning below); pacing (this is sensible pacing and nothing to do with Prof. Peter White’s PACE trials).
- Co-Enzyme Q10
- Reflexology: amitriptyline (used mainly for sleep improvement, not for depression. See warning below).
- Prayer; osteopathy; acupuncture; D-ribose; gabapentin; vitamin B12 injections; vitamin C; Veg EPA; L-Carnitine.
Warning: too much magnesium can cause diarrhoea. Also, amitriptyline caused a significant rate of negative side-effects for sufferers in the survey.
You might also find some helpful treatment advice from Jodie Bassett’s excellent work at: www.hfme.org (Click on symptoms and then go to M.E. treatments.)
2) Hospital Booklet
We were given a grant in 2018 by the Tesco’s Bags of Help scheme to specifically produce this booklet. The idea behind the booklet is to inform hospital staff of the serious nature of M.E., regarding particular kinds of anaesthetics etc. and also to stop nurses and physiotherapists pressurising sufferers into exercise they cannot do. If anyone would like a copy, let us know and we’ll send you one.
3) The sending out of the Canadian Guidelines to all GP surgeries in Kent
There has been an international booklet from Canada, published since 2005, of specific guidelines to GPs and medical practitioners. Although not perfect, it is probably the best one to date and certainly beats the rubbish most doctors in the U.K. are fed with about M.E.(CFS) by the NHS. The Grace Charity has sent a copy of these guidelines to every GP surgery and community matron team in Kent and Medway.
4) Kent NHS hospitals
All Kent NHS hospitals and some selected London and East Sussex hospitals have been given copies of the Hospital Booklet and the Canadian Guidelines. Eleven Kent-based private hospitals have also been sent the booklets.
5) The challenge of Kumar and Clarke Clinical Medicine
The Grace Charity for M.E. has been involved in written correspondence with the publishers of this book, Elsevier, requesting that M.E. be taken out of the psychology section and placed in the neurology section of the book. The description for M.E. (under CFS) in this book is disgraceful. It also has other physical conditions such as Fibromyalgia, Irritable Bowel Syndrome and Multiple Chemical Sensitivity in the psychology section. This book is dipped into by many GPs, nurses etc. as it is fairly ‘user friendly’. Please pray that we are guided correctly as what to do next.
6) Tests for M.E.
Unfortunately, there aren’t many tests available on the NHS for M.E., but we have compiled a list of tests on our Practical Guidance page http://www.thegracecharityforme.org/guidance.asp which you might be able to get privately or on the NHS. Please let us know of NHS tests you’ve had done to bring about an M.E. diagnosis.
7) Recommended M.E. Consultants
We are compiling a list of recommended doctors (both private and on the NHS) with their permission, for sufferers to contact. Please contact us with recommended M.E. doctors and why you are recommending them. Please see Practical Guidance page for recommended doctors.
8) Dental leaflet
A dental leaflet for M.E. sufferers and dentists, find it on the Documents page.
9) Booklet entitled ‘Reasons why an M.E. sufferer may refuse GET & CBT’
We are currently working on this booklet, which will hopefully empower M.E. sufferers who refuse GET and CBT. In the meantime, you may find the following document useful for this subject: ‘Saying No Can Be Positive’ https://www.thegracecharityforme.org/documents/
Estimated project completion: 2019.
10) Booklet warning the vulnerable re: unwanted End of Life care in hospitals: ‘No Hydration No Life’
Find it at https://www.thegracecharityforme.org/hazel-and-the-lcp/ or on the Documents page. Project completed!
11) A document empowering M.E. sufferers who may be at risk of unnecessary sectioning.
Estimated project completion: late 2018.