Gave my doc, Lis, a copy of a presentation from MERGE, "Biomedical research in ME/CFS: issues and challenges". She glanced through it, and said she'd read it later when she had more time. She still had 6 people to see, and was on call with one home visit lined up already. Then she leaned over to filing cabinet - "I think there's some research going on here in Liverpool", pulled it open and the paper she pulled out was headed FINE Trial.
I just burst out with "I wouldn't touch it with a barge pole! Alison Wearden and that lot from Manchester, I don't trust them an inch!".
She looked a bit surprised at my vehemence.
"I'm a mere GP."
"Yes, they're using you to get people who haven't been ill long and who don't know anything about ME."
Ah well, maybe I should have gone along with it just to see what I got told, and what I didn't.
Here's why I hate the FINE trial so much:
Randomised controlled trial of nurse-led treatment for patients in primary care with chronic fatigue syndrome (the FINE trial)
Awarded to Alison Wearden with (C Dowrick, P Powell, R Bentall, R Morris, C Chew-Graham, G Richardson, S Peters & G Dunn).
Total award: £1,147,000 (£736K Research costs, £411 K NHS costs)
So they're getting over a MILLION UK £££££££. It beggars belief.
We went on to talk about my dizzyness. I've not had any blood tests since they got their new computer system up and running, so definitely over 4 years. Lis suggested that anaemia can leave one feeling dizzy, so suggested I get FBC and ESR and then decided to add in everything else - LFTs, thyroid tests and urea & electrolytes. John will have to try and arrange some time off work one morning to take me, as the clinic near us where they draw blood is only open till 12.30.
I mentioned that when I saw my Chiropracter he thought the dizziness might be some sort of vestibular disorder. Lis agreed, saying "there isn't a blood test for that"! She said that there are drugs to help with it, and she would prescribe if I wanted to give them a try. It was nice of her to offer, but I prefer not to take anything. Or not without having a good reason to.
Our local ME group is meeting this Thursday afternoon at the Glaxo Neurological Centre. They are hoping to find out if anyone has any experience of the fatigue clinic at RLUH. Given the embarrassing job ads put out recently for the clinic, and Dr Nye's apology, I think it may be an interesting meeting. I'm hoping to go to it, will have to take a cab as John will be working.
On a happier topic, I've started drawing my bed for the Everyday Matters weekly challenge. Not sure if I'll have the energy to do any more today, but at least I've made a beginning.
You can find the picture above on fotolog as well.
I'd really like to do some more work on this RIGHT NOW, but I was so shattered after doing my last drawing in one 4 hour session that I think I need to pace myself rather better. So I'm back in bed resting until Helen gets here. Maybe more drawing later.
2 comments:
Great entry, Maggie.
I have the same feelings myself about the FINE trial:
"The approach involves helping
patients to understand the symptoms they are experiencing and working
together to agree a plan of rehabilitation."
Even the most experienced physician or researcher can only speculate where some of the symptoms can come from; few would feel confident in explaining where symptoms such as sore throats, tender lymph nodes, alcohol intolerance, and lots of others come from unless they started mentioning immunological or virological theories, which aren't likely to be part of what these nurses are telling the patients.
The reality is that no one really knows what causes the symptoms found in ME/CFS. Most patients I know would rather this money be given to other illnesses than spent on this trial; that's saying something given the lack of funding. But the fact is that any conclusions about how beneficial such an approach is are likely to be flawed. Take Care. Tom
hi maggie! thank you for visiting my paperjournal site =) i like your bed drawing.
i can't seem to draw with color straight! nice job!
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