Sunday, 10 June 2012


I find it very hard to identify how severe my M.E. is. I have read and been told that there are three severeities:
- mild M.E.
- moderate M.E.
- severe M.E.

I had always assumed that I was a mild case, since up until the last couple of years no doctor had ever taken me seriously, made an effort to make me better, or made an effort to help me see a proper specialist. Over the last few years two of my friends have seen specialists. Neither of them were as ill as I was, yet both were identified as being 'moderate' cases of M.E.. I actually felt hurt, as if they had been mis-labelled, rather than I was underestimating how ill I was, and this somehow felt as if their specialists (who obviously had never heard of me) were telling me that I was not actually ill.

For most of the past decade I have sort of muddled along. From 2001 to 2010 I was making a very very slow recovery. At the beginning of 2010 my body was finally asking me to exercise again, so I was attending the local recreation centre embarking on an exercise program with the help of one of the fitness instructors who had previous experience with CFS. (Funnily enough he was at university with me). In June of 2010 I became ill, I developed pneumonia, and became so ill I could not get out of bed. Despite the pneumonia clearing up my body would still not accept food properly until early December.

Despite being so ill, I did not consider myself to be a severe case. I genuinely thought I was going to die, yet I thought that if I was trully that ill someone would at the very least have hospitalised me. As such, surely I was mistaken, I obviously wasn't as ill as I thought I was.

I recovered. Then at the beginning of this year a cold started me relapsing, and a reaction to mould pushed me over the edge into bed again. It was not as severe as my previous relapse, but it caused severe depression. I've been on suicide watch for the last few months.

And yet I still do not consider myself to be a severe case. Four months ago I could not have walked up a flight of stairs without pausing, yet now I can walk up and down the road without any M.E. related problems. It is very confusing to vary so spectacularly within such a short time frame. How can I make judgements over how ill I actually am when things change on a daily basis?

It was when I attended the specialist unit a couple of months ago that I started to see the reality of my situation. The doctor I saw was new to the unit. She asked me how long I had been experiencing symptoms. She asked me to describe my symptoms and the problems they cause. When I answered her that I had been ill since 2001, and could not remember what normal was like so have difficulty describing the symptoms, she was uncertain what to do. She told me that normally they see patients who have been experiencing fatigue for six months. She called in a more experienced doctor, and between them they told me that because I have been ill for so long there is probably nothing they can do for me.

I was extremely upset. I felt at the time that they were almost saying it was my fault that I had not attended the unit 11 years ago. They said they would try to help me anyway.

The first course of action was to test my adrenaline levels. They tested six of us at the same time. Listening to the other five patients left me feeling very demoralised. All of them had had to take time off work to attend the hospital. They all worked full time. Three of them had families. Their general complaint was that they were so exhausted when they got home from work that they didn't have the energy for a social life any longer. I hope that the unit can help these ladies. I hope that none of them go on to develope full blown M.E., and that this is just a blip in an otherwise healthy life. I am very happy for them that their doctors recognised that they have a problem and sent them to the fatigue unit. I do hope also though that none of them go away telling people they 'had' M.E., and recovered from it. (I'm definitely leaning towards believeing that CFS is not M.E., but M.E. is the most severe form of CFS).

I didn't dare to tell any of them how long I had been ill for, or try and partake in their discussions. I felt out of place as I could not relate to their world of work and families. Nor did I want to scare any of them into thinking they could get as ill as I am.

That is when I realised that I am a more serious case. "As ill as I am." I am ill. I have been for a long time. I should have had help years ago, but it was never forth coming. This is not my fault, but the downfall of many NHS doctors.

I think I went from being a mild/moderate case in early 2010 to being a severe case, within the space of a few days. I think I am now a moderate case. I think it is important that I recognise how ill I am, that I stop denying it, so that I can make progress.

This post is purely me meandering over things in my head. A post on one of the Facebook groups lead to my writing this today. A member who is very obviously a severe case of M.E. posted about a difficulty she has been having. Someone else replied to say that she does not allow M.E. to stop her. "If you aim high you can achieve anything." Obviously, I do not know this person, so cannot judge them, but my experience of M.E. is that it DOES stop people doing things, in a very major way. Unlike my fluctuations, there are so many people on the groups who are constant severe cases. It makes me realise that even within the M.E. community people find it very hard to grasp the varying severity of this condition. And also seem to find it hard to grasp the difference between fatigue problems and M.E..


  1. cheers Olana,

    yep.the mind magic and exrecise/activity protocols has seen so many from our online community have severe relapses and dissapear for months/years at a time, or indeed never come-back.

    and they wonder why we detest wessley and his ilk. The pace trial was a fraudulent farce.

    The only hope O have is that now the case against Judy Mikovitch has been thrown out, that she can get a hold of this HGRV (hunman gamma retrovirus) that she found in people with severe ME.

    fingers crossed..


    1. Well my good news of the day is that my physio has referred me to a new physio in the area I've moved to ... this time I'll make sure I communicate very early on that exercise is not going to fix me, and thrust the Mitochondrial Failure document at them in the first meeting! I'm damned if I'm getting graded exercise AGAIN!