My name is Dr Charles Shepherd, I’m medical advisor to the ME Association, which is a self-help support charity for people with ME/CFS.
ME/CFS it’s an illness which normally starts suddenly, it often follows an infection, maybe a fairly trivial infection, and it tends to affect people in their 20s ,30’s 40’s although children can be affected as can more elderly people. I first got involved with ME/CFS after catching it myself .
I was working as a hospital doctor at the time and one of my patients had shingles and I caught a very nasty dose of chickenpox from it and that’s what triggered my ME/CFS in the first place.
I think that a lot of people don’t realise that it’s a very debilitating illness, it involves a combination of symptoms but in particular muscle symptoms, exercise induced muscle fatigue, quite often pain, brain symptoms, problems with memory, concentration, attention span, balance, not being able to stand up properly, and also just not feeling well. Continuing to feel flu-like, you put them all together and it is an illness that is going to affect every aspect of what we try and do.
It’s an illness which can in most cases be diagnosed by your general practitioner, but he can’t do it in a single appointment so you’ll probably need to ask for a double appointment if you are querying this diagnosis.
Your GP really should take a detailed history to make sure he’s not missing any other causes of an ME/CFS like illness, because there are a lot of other illnesses that can present with these sort of symptoms.
So after taking a detailed history, your GP will also want to do a range of investigations to rule out things like heart disease, kidney disease, thyroid disease and other illnesses which can cause ME/CFS like symptoms.
(on screen at this point is a screen of NHS website with Childhood trauma and ME on it)
If he’s not sure then your GP can refer you to a hospital specialist for a more accurate diagnosis.
I think there are five key aspects for the management of this illness.
First of all is getting activity management correct, getting the correct balance between activity and rest.
Secondly is the use of drugs which can be helpful for treating things like pain and sleep disturbance although we don’t have a drug which is going to cure this disease.
Thirdly is sensible use of alternative and complementary therapies.
Fourthly is dealing with work and education, where that’s relevant.
And fifthly is dealing with emotional and psychological problems if they arise.
Unfortunately we don’t yet have a drug that will cure ME/CFS or effectively treat it and this means that the outlook is quite often rather unpredictable.
But we do know that people tend to fall into one of three broad groups.
First of all are those who make slow but steady improvement, secondly is a group in the middle who tend to follow a rather up and down and rather erratic course but they eventually stabilise from this pattern.
Thirdly there are a small, perhaps 20-25% of people with this illness who fall into a severe category who remain housebound, bedbound, even wheelchair bound, with this illness.
The good news for children and adolescents who have this illness, is that on the whole, their outlook is far better than adults who have this illness, and a lot of children do return to full, normal health.
This is an illness that affects all parts of the persons life, not just the medical aspects, it affects their family, their relationships, their finances, what they do in relation to work, school, social activities etc.
And all these things are going to be affected by having ME/CFS and they are likely to be affected for some time. So this is something that people have to come to terms with and get whatever help in the various different areas that they feel is going to make them, you know, improve from that point of view.
