ME and Ophelia

MEDICAL RESEARCH COUNCIL, UK
MRC CFS/ME RESEARCH ADVISORY GROUP

CFS/ME Research Strategy Final Report May 2003

Conclusions and Recommendations

175. The MRC CFS/ME Research Advisory Group considers that studies investigating potential causal pathways and mechanisms, whilst having merit, may not have the same immediate impact on increasing understanding of CFS/ME, nor reducing the suffering of patients. This view reflects the probable multiplicity of causal factors and the widely disparate findings so far reported. It is not that such studies should not be undertaken, but is recognition of the potential dangers of avoidable delays in understanding symptoms and finding novel treatments whilst aetiological studies are in progress. The MRC CFS/ME Research Advisory Group acknowledges the contrary views of some respondents to this recommendation, but considers there to be many other examples across medical research to justify this approach.
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Following on from my post of 14 July 2003, I have extracted the above paragraph from the Conclusions and Recommendations section of the Medical Research Councils CFS/ME Research Strategy Final Report, produced by the MRC CFS/ME Research Advisory Group in March 2003 and given final approval by the MRC in May 2003.

Whilst pondering on its meaning (in plain English) I received two telephone calls this week which, roughly speaking, went something like this:-

Caller:
Are you doing anything next Sunday? I am calling to ask you if you would like to join us for lunch next Sunday. It would only be for a few hours. Hope you can come. I will pick you up and drive you back home again.

Me:
Oh, thank you, that sounds great. It would be lovely. I would love to come but sorry I cannot. I am too ill.

Caller:
Oh come on. I am calling a week ahead in order to give you plenty of time. You would not have to do anything. All you have to do is say yes. It would only be for a few hours, and you will be home again.

Me:
I would love to come but sorry I am too ill to go out. I cannot make it but thanks for thinking of me and for the invitation.

Caller:
You CANNOT lock yourself away like this!

Me:
You do not seem to understand. I am too ill to go out. The last time I went out was to the dentist and optician in February and March, nearly six months ago. I am housebound.

Caller:
Yeah, sure, I understand. If you will not come, or do not want to come, that is OK, I shall understand.

Me: [getting stressed]
No you do not understand! You make it sound like I have a choice! I do want to be with you all but I am too ill to go out. Either you do not understand or you do not believe me!

Caller: [raised voice]
I do understand! It would only be for a few hours. You have GOT to get out.

Me: [wailing like a 5-year-old banshee in a tantrum]
No you do not understand! No matter how much I explain, over and over, day in, day out, year after year, you just do not understand!

[Bad night knowing that the caller was upset too]

Next day:

2nd Caller:
What DO YOU MEAN you are NOT coming out with us on Sunday! You have got to go. Oh, go on. It would be great for us all to be together. If you do not come then, when can we all be together again?

Me:
I know. I would love to. You know I would go if I could. But I am sorry that I cannot make it. I am just too ill.

2nd Caller:
Oh come on. You will be driven by car from door to door. Go on. It would only be for a few hours.

Me:
Do you think that I do not want to go out? I would love to get out anywhere but I am just too ill to manage it.

2nd Caller:
Yes, but, you must try. If you do not try, you will not know if you can do it or not. It would only be for a few hours.

Me:
You do not understand. I cannot sit up for two hours.

2nd Caller:
Do not say that we do not understand! OF COURSE we understand. We just thought that given enough advance warning, you could pace yourself and get out for a few hours. You did manage it last time.

Me:
Yes, I know, but that was nearly six months ago. For three months afterwards I suffered so badly, life did not feel worth living. Seem to be getting worse. Have trouble sitting up or being vertical for more than ten minutes.

[Silence. Momentary pause]

Me:
Even if I was pushed in a wheelchair, I could not sit up in it for more than ten minutes.

2nd Caller:
You cannot be like this for the rest of your life! Will you? You will get well again. You must believe that. Do you?

Me:
Not sure. I speak to others with severe ME. They have all been just as ill. Some for ten years or more.

2nd Caller:
But you must keep hope. Something will happen. You will go down and then slowly start to get better. They will find a cure soon.

Me:
Doubt it.

2nd Caller:
Oh, of course, they will. They may even, all of a sudden, overnight, come up with a tablet that will make everything all right.

Me:
I do not think so.

2nd Caller:
Of course they will! Why on earth not?

Me:
They have not even started on the right research yet - and when they do, it will take years, so it may not be in my lifetime.

[Pause. Both upset. Change of subject. End of call.]

The end of another day with severe ME. Approx. 1,297 of them so far.

Perhaps when I am able to read, in full, our government's Medical Research Council's final report on the UK research strategy for ME, it may make me feel more positive that there is hope around the corner? I think not. I am feeling too rough to take it all in right now. Cannot stand up at the moment without feeling dizzy and being sick. It has taken me all week to complete this post.