The illness has an individual element – your particular version is probably not the same as anyone else’s in all its respects. As a result, you may find that a treatment that relieves particular symptom(s) for someone else may not do the same for you – indeed it could even make you feel worse. On the other hand, something which someone else found to be of little use could be useful for you. Both mainstream and complementary medicine practitioners have some ideas which you could consider.
Guidance for diagnosis and management of people with ME/CFS can be found in The ME Association publication ME/CFS/PVFS An exploration of the key clinical issues, written by Dr Charles Shepherd and Dr Abhijit Chaudhuri of the University of Glasgow.
This a very useful guide for the patient and by reading it, you will be better-informed should you and your doctor decide to follow one of the treatment regimes. As the booklet was aimed at ‘mainstream’ medical professionals, the ‘Treatments’ section of the booklet focuses mainly on ‘mainstream’ treatments; there is a short discussion on complementary methods. You can obtain the booklet directly from The ME Association.
A person who was previously fit and active who contracts ME/CFS will find that it imposes restrictions on their way of life. It is important to come to terms with this. Many find that the ‘battle on regardless’ attitude which they have applied to ill health in the past will almost certainly fail, and may prolong the period of incapacity. This does not mean retiring to bed in the belief that absolute rest is the best remedy (although bedrest is appropriate in the acute stage) but that you should attempt to pace yourself, endeavouring not to become so active that you are permanently exhausted.
It is important to remain positive about the prospect of recovery. Nobody has managed to determine which factors affect the rate of recovery, so from this position of ignorance you have as much chance as the next person of making useful progress. The period of illness varies from person to person, and even in someone who has had it for a long time it can, for no apparent reason, start to show real signs of improvement.
Adopt sensible changes in your lifestyle and develop a plan: Following a thorough assessment, go on to develop an individual management plan. It is unlikely that one person alone will be able to provide all the answers to all of the problems you face; one idea is a team approach co-ordinated by a key worker with experience and knowledge of chronic fatigue syndromes – perhaps your GP with access to specialist advice.
Whether wishing to remain at work or school whilst enduring a period of ill health, or whether intending to return after a period away, the suggestion is to apply the principles of pacing. This will need the co-operation of your employer or school. Aim for part time attendance with a gradually increasing workload and a flexible approach.
Many people find a relaxation technique of benefit and try to couple this with a form of gentle exercise: yoga, chi gung and t’ai chi are among some of the methods used.
While research into the cause(s) of ME/CFS continues, the emphasis for the individual is on treatment of symptoms.
Although a number of trials of different methods have been reported, some apparently showing promise, there is as yet no accepted known cure, and no accepted universal treatment. Most studies have involved only small numbers of patients so the results, positive or negative, should be viewed with considerable caution.
The ME Association has prepared a number of very useful Information Leaflets on Medical Management of the illness including:-
- Sleep disturbance
- Symptom relief
- Coping with pain
- Alternative and Complementary therapies
- Vitamins and Vitamin Supplements
- Energy Management
A full list and order form can be found in “Shop with the MEA” on this site.
The following forms of management are amongst those discussed in The ME Association’s Booklet: ME/CFS/PVFS An Exploration of the Key Clinical issues which you can buy directly from the ME Association.
- Activity management (pacing; graded exercise regimes)
- Allergy treatments
- Antiviral drugs
- Cognitive Behaviour Therapy
- Hydrocortisone and other hormonal treatments
- Immunological treatments