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 this website under '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. The New International Consensus Criteria for M.E.
This is an even more recent criteria (2011) than the Canadian but is not curently available in booklet form. It separates M.E. as a distinct entity from CFS. The International Criteria can be viewed in The Journal of M.E. Volume 6, Issue 1 ordered from Invest in M.E. www.investinme.org or Care for Someone with Severe Myalgic Encephalomyelitis by Greg Crowhurst (ordered via Stonebird www.stonebird.co.uk).
Alternatlively, the International Criteria can be viewed at www.onlinelibrary.wiley.com. You may have to do an online search, putting in the following information: Vol 270 Issue 4 published in Journal of Internal Medicine, pages 327 - 338, October 2011.
4. Hospital Booklet.
You might find a hospital booklet helpful, for M.E. sufferers, which can be downloaded from this website under '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.
5. 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 '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).
6. 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. (The mitochondria is the energy producing part of the muscle.) Dr. Myhill often suggests treatment with certain supplements.
Dr. Sarah Myhill
Upper Weston
Llangunllo
Knighton
Powys
LD7 1SL
Telephone: 01547 550331
Email: office@doctormyhill.co.uk
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: [temp. unavailable]
email: thefatigueclinic@yahoo.co.uk
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.
Unfortunately, Dr. Wright is currently not practising as he has been suspended by the GMC (General Medical Council), possibly until June 2013. The case against him appears to be very trivial. It is possible that he still might be able to read his emails and post but he doesn't appear to be responding (probably due to legal advice). Please contact him to encourage him at this difficult time. He has helped countless people with M.E. and deserves thanks not condemnation. Please pray he can still practise as a specialist M.E. doctor.
PROF. BASANT PURI (private treatment). Prof. Puri sees M.E. patients privately.
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. WILLIAM WEIR (private treatment). Dr. Weir treats M.E. from a biomedical perspective. His basic consultation is £250 which includes a letter type summary of his findings. More extensive reports would be around £500. Further tests can be arranged, should he feel they are necessary, either on the NHS or privately.
Dr. William Weir
10 Harley Street
London W1G 9PF
Tel: 020 7467 8478
DR. RAYMOND PERRIN (private treatment). Dr. Perrin has developed a technique for M.E. sufferers call The Perrin Technique. It is an osteopathic approach, which may include some massage, to help drain toxins from the body. (If you're interested in this treatment, do inquire about possible pressure on your muscles if you're sensitive to touch.)
Dr. Raymond Perrin
The Perrin Clinic
83 Whittaker Lane
Prestwich
Manchester M25 1ET
Tel: 0161 773 0123
email: info@theperrinclinic.com
There are practices outside Manchester. Currently, Dr. Perrin charges £200 for one and a half hour consultation in Manchester. He sometimes comes to Hertfordshire, where he charges £250 for a one and a half hour consultation. There is weekly treatment following the consultation, at approximately £40 per treatment.
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. (At the moment, this list is minimal; it also depends upon where you live in the UK.)
Breakspear Hospital in Hertfordshire has also helped some 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.
N.B. We've had mixed feedback from sufferers regarding Breakspear. Some have found it very helpful from a biomedical perspective. However, a severe M.E. sufferer has said that the nursing team there followed the NICE guidlines and therefore used a psychosocial approach to this person's M.E. If you do decide to go there, it might be best ahead of the time that you ask for test results to be interpreted from a biomedical perspective and that appropriate treatment, e.g., supplements, will be administered if necessary.
Tel: 01442 261333
DISCLAIMER: Although the Grace Charity for M.E. intends to help sufferers, we can't take responsibility for any ill-effects caused by the above list of practitioners, should you try them. However, we do want to hear of both positive and negative experiences of the above and other practitioners.
7. 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).
8. 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
9. 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).
Tel: 01292 318611
Please see also Useful Links (under Useful Documents page) for other contacts.
10. 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.