BBC Radio Bristol (June 17) (PACE Trial, etc.)

[Dolphin]

http://www.afme.org.uk/news.asp?newsid=864
Research into M.E.
M.E. expert Dr Hazel O'Dowd talks about the impact of M.E., and the research being done at the M.E. Centre at Frenchay Hospital, Bristol. Ennis Hughes, who has M.E., also talks about his diagnosis.
BBC Radio Bristol, Steve Le Fevre, I min 11 sec www.bbc.co.uk/programmes/p008940p
17/06/10

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Here are a few quick notes and observations/moans from me.

1st bit:
1:11:55-

Reporter:
The woman is said to be on the "road to recovery"

[Dolphin: but most people don't recover (I prefer if recovery is only used when people are actually recovered). Anyway, she was being honest about what she thought so don't mean to criticise her much]

--------
Frenchay hospital is said to be "trying to find a cure for ME"
(they are talking about the PACE trial)

Dr Hazel O'Dowd:
she is sympathetic enough
but
uses the phrase that

"there is some good evidence out there about what can help people recover more quickly"

[Dolphin: there is not "good evidence" about what helps people recover more quickly. Recovery is rarely measured and definitions are not very good.
There were no recovered people in the O'Dowd et al (2006) study].
She mentions PACE Trial


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Interviewee:
"I'm hoping to be working full-time in a year" - most people don't get back to full-time work.
(I wonder was she put forward as somebody who was doing well or thought they were doing well)

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1:43:40-1:45:0
Texter complains that ME is not CFS.

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2:06:45-2:16:45
Talks about research in Frenchay looking for "cures" for ME/similar.

2:14:45 - unsympathetic texter

2:20:45-2:21:45
Text that a survey found most people made worse by GET (25% ME Group) - Lorna

Presenter: Research going on at Frenchay into cures and so on into Chronic Fatigue Syndrome.

There may be other texts - I didn't listen to it all

 

[V99]

I agree with Dolphin, and add, she hasn't recovered though!

 

[V99]

Just got to 2.09 - What, it's more PC to call it Chronic Fatigue!

Don't want to say she doesn't have it, but she says it started with IBS, and she still has this, and needs to watch what she eat. Well, that would cause CF, but not necessarily CFS. Unfortunately it may take her another ten years to realise that the treatments they have been giving her did not work, and that the disease is being ignored.

Not impressed with the interviewer, he has not done his research. He is sympathetic , but assumes that the complaints about the definition are not valid because of what the NHS says. (I guess people forget that the NHS is political too)

 

[Dolphin]

Good points.

Unfortunately it may take her another ten years to realise that the treatments they have been giving her did not work, and that the disease is being ignored.

Yes, think there are cases out there like that. They think they will gradually they will get there but really they are still not better years after sticking to programs.

 

[Min]

the usual useless drivel then *sigh*

 

[Virtuousbumblebee]

Hi all, I'm new here, fairly recently diagnosed with ME. I got diagnosed by Dr O'Dowd. It's interesting because in her words to me back in April, she said "we don't talk about recovery, because there's no known cure; we talk about getting better"

 

[V99]

Hi there Virtuousbumblebee, welcome.
How was the treatment you got from Dr O'Dowd?

 

[Virtuousbumblebee]

I've been offered neither treatments - just pacing.

 

[V99]

"we don't talk about recovery, because there's no known cure; we talk about getting better"

How very helpful of her! Yes, lets not work towards a cure, lets just make you a bit better. (of course, if the CBT has any effect on you)

What is her definition of 'recovery', because mine would be working, relationships, exercising vigorously, etc. CBT & GET are not able to do that.

 

[V99]

Is she not convinced by CBT and GET then?

 

[V99]

Sorry for the confusing posts Virtuousbumblebee.

The 9th one reflects how I feel about the PACE trial.

 

[Virtuousbumblebee]

She mentioned that some people used them, but obviously didn't see it as a course of action for me!

Hi. I found it helpful getting the diagnosis; I felt that she was reassuring, optimistic yet cautious. Was helpful in advice about employment etc. One thing I don't know is how often I get reviewed. I was then passed to the OT who has been helping me with pacing.

 

[V99]

When you say pacing, is it the type patients believe in, or the one where the get you to set activity goals? You don't have to answer any of these question by the way.

Dr O'Dowd does come across as being compassionate and understanding, but the mention of the PACE trial is what bothers me. Also her statement that, "we don't talk about recovery, because there's no known cure; we talk about getting better". It sounds like she is confused by the word cure, or she is being manipulative.

 

[Virtuousbumblebee]

It's just things like rest periods, but not too much. Not over-sleeping...that kind of stuff. I'm not really well-read on other treatments because I don't like to hear the reports about the unlikelihood of recovery. I'm determined to get better!

 

[Esther12]

I know someone who was recently referred to an OT for GET (strange story how this happened - it was surprise GET!). Yet it was just pacing, but now called GET. An emphasis on spreading activity out, and trying to keep activity levels consistent rather than boom and bust, activity diary... that sort of thing. It reminded me of Myhill more than Chalder. No talk of raising activity levels unless the pacing helps and means that you feel able to do more without increasing symptoms.

Words become meaningless with CFS. GET, CBT, CFS - none of them seem to refer to anything well defined or understood. We're closer to theology than medical science.

Good luck with your CFS VBB. It seems people who've been ill less long are more likely to improve. Fingers crossed for you.

 

[Virtuousbumblebee]

Thanks Esther. Dr. O'Dowd also said this, and that because it was a viral onset (I got swine flu last August which triggered ME/CFS) and I was young (23) I stand a better chance. So far I'm still trying to work out what makes me worse/better. I find the illness just seems completely random! I feel moderately better having cut down on work (switched part-time on PhD and cut back working hours) but there just seems no rhyme nor reason to periods of feeling worse/better really!

 

[ukxmrv]

Did you get a definition of "oversleeping"?

The reason that I ask is that personally I have found that I get some poor advice that that area, under the guise of "pacing".

Historically "pacing" was a term used by ME patients in the 80's to try and describe how we tried to manage the disease. It was then hijacked by the CBT/GET brigade and now can mean anything at all.

XMRV+

 

[V99]

The best advice you will ever get, is to listen to what your body is telling you. Eat well, and yes try to get proper sleep, at night. Your body will want you to sleep in the day, and sometimes you will have no choice but to do that. This is also listening to what your body needs.

There is no cure, but you haven't had this too long and you are young, and these things tend to give you a better outcome. The early days can be the hardest, as you learn to manage your energy levels. You now have an energy envelop, if you go above this level you will crash, the more you force your body to go over this, the worse the crash. Test out your boundaries gently, work out what does push you over. It can be a simple as talking, read a page, standing to make a drink, anything. There is usually a delay to this crash, for some it will be a few minutes, to others it will be a few hours, even weeks. It will take time to do this, but it will really help.

Oh and don't put pressure on yourself to get better, it's not you, it's the disease. And have a look at what others say on here, lots of good advice.

Hope this helps some.

 

[V99]

ukxmrv is right.

Pacing is not a therapy, it means listening to your body. The psych's have highjacked this, and altered it, now it looks like a milder version of GET.

 

[Marco]

Thanks Esther. Dr. O'Dowd also said this, and that because it was a viral onset (I got swine flu last August which triggered ME/CFS) and I was young (23) I stand a better chance. So far I'm still trying to work out what makes me worse/better. I find the illness just seems completely random! I feel moderately better having cut down on work (switched part-time on PhD and cut back working hours) but there just seems no rhyme nor reason to periods of feeling worse/better really!

Hello and welcome VBB (if you don't mind me abbreviating)

Esther is absolutley right that you have a much better chance of recovery at the earlier stages.

Purely anecdotal, but I strongly suspect my chances of recovering would have been much better if I'd not been intent on pushing on regardless (with university and then work) when I first became ill.

Obviously, only you can judge what is best for you in light of your circumstances, but, if I could make a suggestion, please do consider taking time out if you feel you need it or think it would help. A 'lost' month or even a year might seem like a big deal to you now but might be the best thing in the long run.