Practical Guidance
Practical Guidance
If you have M.E., the following might help you practically:
1. G.P.
Try to get a supportive G.P. They are the gateway to much needed benefits. If you can’t get a supportive G.P., empower yourself with knowledge about M.E. If you’re too ill to do this, encourage your carer to do this for you. Do be aware that in your search for knowledge, you will find a lot of lies written about M.E./CFS, especially of the psychological/psychiatric kind.
2. Canadian Guidelines.
Get yourself a copy of the Canadian Guidelines, proper title, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners (authors, Carruthers and van de Sande), published 2005. To date, these are the best medical guidelines for both doctor and patient. It can be downloaded from the Grace Charity website under Useful Documents; alternatively, you can buy a hard copy for under £2 from Invest in M.E. at info@investinme.org , or phone 02380 251719.
Why not give a copy of the Canadian Guidelines to your G.P?
3. Hospital Booklet.
You might find a hospital booklet helpful, for M.E. sufferers. This can be downloaded from the Grace Charity website under Useful Documents, or contact us for a hard copy at info@thegracecharityforme.org This booklet mentions drug and chemical advice etc., should you need to go to hospital, even as a day patient.
4. Treatments.
There are some treatments, mainly supplements, which might be worth trying.
1. VegEPA: this can help M.E. symptoms generally. Available from www.thevegepaformescheme.com
2. Co-Enzyme Q10: can help both muscular and cognitive problems.
3. Acetyl L-Carnitine: can also help muscular and cognitive problems.
4. Enada: mainly helps energy levels.
5. Vitamin B injections: can help energy levels and help with sensory overload and cognitive problems.
6. Magnesium injections: can help with muscle strength and energy (too much can give diarrhoea).
Some GPs give the above on the NHS but you’ll most likely have to pay for them privately. You can get some supplements from health food shops. The following might also sell the above supplements:
If you think you have true neurological M.E., then it’s best to avoid Graded Exercise (a popular therapy) as it could ultimately make your illness worse. Also, beware of another popular therapy, CBT (Cognitive Behavioural Therapy) which often involves Graded Exercise. For further scientific findings and patient surveys on these therapies, please see our paper Saying No Can Be Positive, under Useful Documents.
Never push yourself to the point of exhaustion, physically or mentally. A general guide is to do less than you are able to do, so that your body won’t ‘crash’ (relapse).
5. Helpful Doctors.
The current NHS treatment for M.E. (called Chronic Fatigue Syndrome by the NHS) is mostly Graded Exercise and CBT, sadly. You should also be able to get medicine on the NHS to help with pain and sleep control. Regarding other treatments, e.g. supplements and drugs recommended for M.E. in the Canadian Guidelines, it really depends on your GP if they prescribe them on the NHS. Their hands, though, are greatly tied by the NICE guidelines (National Institute for Health and Clinical Excellence) which currently doesn’t favour treatments outside those previously listed. However, a GP can prescribe a drug outside the NICE guidelines for any patient on an individual basis, if he/she feels it would be appropriate. The GP would have to record why they have taken this action.
All GPs and consultants differ in their treatment and attitude to M.E. patients. If you feel that you’re not getting anywhere with the NHS, there are some ‘tried and tested’ private doctors who have helped some M.E. patients over the years.
DR. SARAH MYHILL (private treatment). Although Dr. Myhill prefers to use the term CFS, she has nevertheless helped some patients of genuine neurological M.E. She offers a test called the Mitochondrial Function Profile test which she believes is helpful for M.E. sufferers. It actually includes seven tests and will involve blood test(s) which are then sent through the post. More about this test can found on her website www.doctormyhill.co.uk Click on Fatigue and then go to Tests. The Mitochondrial Function Profile test currently costs £295 which also includes a letter to your GP. Dr. Myhill often suggests treatment with certain supplements. (The mitochondria is the energy producing part of muscle.)
Dr. Sarah Myhill
Upper Weston
Llangunllo
Knighton
Powys
LD7 1SL
Telephone: 01547 550331
Email: office@doctormyhill.co.uk
Please note that since April 2010, Dr. Myhill has had restrictions on how she can now practise, passed down from The General Medical Council. No charges, no evidence and no case about her were presented in this unjust restriction. No patient complaint was lodged to the GMC about Dr. Myhill; indeed, Dr. Myhill received thousands of petition signatures in support of her having the full GP rights to practise. Please see her website for how best to support her battle with the GMC.
DR. ANDREW WRIGHT (private treatment). Dr. Wright treats with both orthodox and complementary medicine. He is particularly interested in finding an infectious cause behind M.E. through the treatment of antibiotics. He can advise over the phone if the sufferer is too unwell to travel to his clinic.
Dr. Andrew Wright
33 Leigh Road
Westhoughton
Bolton
BL5 2JE
Tel: 01942 819301
Cost of treatment: £150 for initial consultation at his clinic.
£100 for initial consultation over the phone, if too unwell to travel.
Follow up appointments are at a lower price.
PROF. BASANT PURI (private treatment). Prof. Puri sees M.E. patients privately, and treats the illness as biomedical.
Prof. Basant Puri
Academy of Nutritional Medicine
41 Riding House Street
London
W1W 7BE
Contact person is personal secretary Clare Palmer:
Mobile: +44 (0) 7855 866835
Fax: +44 (0) 1223 306862
email: clare.palmer@aonm.org
DR. BYRON HYDE (private treatment). Dr. Hyde is a Canadian doctor who specialises in M.E. He does treat patients from abroad and comes to the U.K. every year. It’s possible to see him as a patient in the U.K. However, depending on the availability of the tests in this country that he wants carried out, he may require the patient to go to Canada (expensive).He would want to work with your usual doctor.
More information can be found at www.nightingale.ca
The telephone number of Dr. Hyde’s clinic is: 001 613 7298995 (remember that Canada is several hours behind, if you phone).
Dr. Byron Hyde
Nightingale Research Foundation
121 Iona Street
Ottawa
Ontario
Canada
K1Y 3M1
NHS CONSULTANTS IN U.K.
There are consultants in the NHS who treat M.E. as biomedical. However, some have requested for us not to advertise this. Please contact The Grace Charity for M.E. if you require more information about NHS consultants.
Breakspear Hospital in Hertfordshire has also helped M.E. patients. It is mainly a private hospital but does treat M.E. patients on the NHS if you can get a referral from your local Health Authority. They can cover many symptoms but have particularly helped M.E. patients with digestive problems and allergies.
Tel: 01442 261333
6. Biomedical Research
Biomedical research is currently being done by the following organisations:
ME Research UK
The Gateway
North Methven Street
Perth
PH1 5PP
Tel: 01738 451234
also, by the Nightingale Foundation in Canada (see above details).
7. Children and M.E.
Children with M.E. might find support from the Tymes Trust. This charity has been set up by former Head Teacher Jane Colby.
The Young ME Sufferers Trust
PO Box 4347
Stock
Ingatestone CM4 9TE
Tel: 0845 003 9002
8. Severe M.E. sufferers
There is an excellent support group for severe M.E. sufferers from the 25% M.E. Group in Scotland (although members can be from all over the world).
www.25megroup.org Tel: 01292 318611
Please see also Useful Links (under Useful Documents page) for other contacts.
9. Prayer
Get people to pray for you and your carer. Peace of mind and hope are essential for you both as you battle your way through this illness together.