Projects
Current Projects:
1) Treatment Survey
The treatment survey project is taking a while to compile. So far, we have 53 surveys completed. We are working on 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. We also want to come up with some routine treatments for M.E. So far, the following treatments have helped sufferers the most (no.1 is the highest percentage of those helped):
1) Various alterations to diet
2) Magnesium (see warning below); pacing (this is sensible pacing and nothing to do with Prof. Peter White's PACE trials).
3) Co-Enzyme Q10
4) Reflexology: amitriptyline (used mainly for sleep improvement, not for depression. See warning below).
5) 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 the most negative side-effects for sufferers in the survey.
Before the results of the survey are compiled, you might find some helpful treatment advice from Jodie Bassett’s excellent work at: www.ahummingbirdsguide.com (Click on symptoms and then go to M.E. treatments.)
Estimated finish of our survey results: 2011
2) Hospital Booklet
We were given a grant in 2007 by Kent Police Property Fund 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.
Project Completed!
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.
Project Completed!
4) All Kent NHS hospitals and some selected London and East Sussex hospitals have been given copies of the Hospital Booklet and the Canadian Guidelines. Kent-based private hospitals are yet to be done. Estimated completion: Soon!
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. Ongoing Challenge.
6) NHS Tests for M.E.
We want to compile some tests which can be requested on the NHS for M.E. Please let us know of NHS tests you’ve had done to bring about an M.E. diagnosis.
Future project.
7) Recommended M.E. Consultants.
We want to compile 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.
Ongoing project.