Frenchay Hospital, Bristol, to lead £250,000 study into the effects of early intervention in CFS

December 16, 2011

News release issued by the North Bristol NHS Trust, 13 December 2011

The UK’s biggest research study into whether early intervention could lessen the effects of chronic fatigue syndrome is due to get underway at North Bristol NHS Trust in spring 2012.

Frenchay Hospital is one of only 40 specialist NHS centres in the UK for people with chronic fatigue, also known as ME.

The multi-disciplinary team which includes occupational therapists, physiotherapists and clinical psychologists has been at the forefront of developing techniques around changes in behaviour and using exercise to help patients beat the debilitating illness.

Dr Hazel O’Dowd, the clinical psychologist who runs the centre, said: “People with chronic fatigue feel incredibly isolated. The illness can have a dramatic and long-term effect on their life.

“Since setting up in 2003, we have worked with hundreds of patients to improve their lives. We have particularly focused on cognitive behaviour therapy and graded exercise.

“For example, people with ME have good days and bad. On the good days it is tempting for them to push themselves and then for subsequent days they are so exhausted they can’t do anything at all.

“We teach them to pace themselves, just do a little, building up stamina, changing the way they see themselves.”

The £250,000 study, which has been funded by the Research for Patient Benefit (RfPB) programme, is a natural progression from the advances made by the Frenchay team.

Dr O’Dowd explains: “Because of the nature of the illness, it can take upwards of four years for clinicians to diagnose ME and during that time people can go rapidly down hill because they are not getting the right treatment.”

The trial will involve around 100 patients from a selection of local GP surgeries. Doctors will be asked to identify patients they think might be suitable for the trial. These will be patients who have complained of severe fatigue, and after blood tests, no other reason for their tiredness is found.

50 patients will continue to receive care through their GP and the other 50 will be put in touch with the team at Frenchay who will regularly assess their condition and give advice on how to manage the fatigue.

After the two year trial, both sets of patients will be assessed to see if the early intervention in the one patient group made a significant difference to their overall condition.

Dr O’Dowd said: “This is very much a feasibility study but it will provide clinicians with important information around whether early intervention has positive benefits for these patients. We await the results with interest and would like to thank the Research for Patient Benefit programme for their support with our trial.”

Information about the Research for Patient Benefit programme can be found by clicking HERE.

18 thoughts on “Frenchay Hospital, Bristol, to lead £250,000 study into the effects of early intervention in CFS”

  1. personally i find this very worrying.
    A study into a cohort of people who are *tired*, and giving early CBT/GET from which, like PACE some (who probably dont have ME) will improve, and thus it will be extrapolated that CBT and GET should be pushed even earlier and heavier onto patients who actually do have ME.

    Very worrying indeed.

  2. So, if the study finds that earlier intervention doesn’t really make much difference to the outcomes for patients in terms of recovery/prognosis, does that mean biomedical research might be allowed to get off the ground or be taken more seriously in the UK??

  3. And if you are severely affected, housebound or bedbound, unable to remain sitting up, having difficulty holding your head up or lifting your arms or swallowing, hypsersensitive to light etc?

    Didn’t Dr O’Dowd’s team comment that their psychological interventions were not particularly helping ME patients a few years back?

    There seems to be a bottomless pit of funding for this type of hogwash.

  4. I agree with homegirl. It’s a no-brainer (given the hindsight of my mere three years with the illness) that if ME is suspected, the first piece of advice people should be given is rest, rest, rest, clear your diary and never push yourself. Of course that is the opposite of what I did, and I suspect what most of us trapped in the illness did. But pushing through was always my response, as a business woman and mother, to illness in my past, and it had always worked ok before.

    It doesn’t take a quarter of a million pounds to work that one out, just a modicum of experience and hindsight.

    This study will be looking at people judged to have chronic fatigue, according to which diagnostic protocol? And is Dr. Crawley involved?

    The money would be far better spent on an anti-retroviral trial, vis Michael Snyderman’s pathfinding self-treatment. See his post here

  5. People with actual ME don’t gave good days and bady days, people with ME have bad days and less bad days. How can you build up stamina when you have abnormal energy production? As Jackie says, this is all hogwash. Great for chronic fatigue, no use whatsoever to those with ME.

  6. “a natural progression from the advances made by the Frenchay team.”

    ugh… i bet the poor souls who have already been made worse or been psychologicaly traumatised by their interventions, are feeling really good about that comment.

  7. again like the Esther Crawley research into ME and Chronic Fatigue syndrome in children there is an amalgamation of ME and Chronic Fatigue designed to devalue ME as being more than just fatigue. As far as ME is concerned they might as well throw this money away it will not help anyone with ME.

  8. Indeed, a meta-analysis of the sort of interventions envisaged by this proposed study at Frenchay Hospital shows that over half of the 4338 respondants felt that GET, as the worst case intervention, was actually harmful to over half of the participants.

    This kind of study invariably uses subjective outcome measures and questionable diagnostic protocols. The UK wasted ±£5m on PACE – there is really no need to throw more money in that particular wastebasket.

  9. Why are studies with no scientific basis being funded?

    The criteria they use does not require a differential diagnosis of ME. Instead the patients are grouped by fatigue, which everyone has at some time in their life and is impossible to define objectively.

    The treatment being used also have no evidence base and are being measured with subjective report questionnaires.

    Where is the science in any of this?

  10. See how it works?

    ME gets an unnecessary new name – ‘chronic fatigue syndrome’ – which, in the hurry of modern life or the shortage of press space or the sleight of hand of the self-interested psychiatrists becomes ‘chronic fatigue’.

    And hey presto!

    Suddenly a distinct illness, needing specific research and treatment, becomes a symptom shared by a thousand other illnesses.

    The result of this is serious. For example, graded exercise may be the bees knees for other illnesses with fatigue as a symptom. But for people with ME it is detrimental, and potentially very harmful.

    This sleight of hand must stop.

    Personally I never use the term ‘chronic fatigue syndrome’ for this very reason – I don’t trust the reasons for its unecessary invention, and I see how massively it muddies the water for those with ME, and how it belittles the immense impact and suffering of this illness.

    When I am too ill to go on a short college trip somewhere, and my classmates caringly say ‘just have a good long sleep the night before’ I realise how misleading the name ‘chronic fatigue syndrome’ is. They think I am just tired, like they sometimes feel, and they think it can be fixed by sleep.

    When what I’m actually feeling is dreadfully ill.

  11. “We teach them to pace themselves, just do a little, building up stamina, changing the way they see themselves.”

    Patronising, harmful guff for PWME.

    Wholly irrelevant.

    Change the way we see ourselves?!

    Really, these practitioners/charlatans should not be allowed within a mile of people with ME.

    Why is this nonsense getting £250 000?

  12. I’m sorry but I have to respectfully disagree with the above comments. I became ill with m.e when i was fourteen and am still ill 5 years later. I was treated by a member of this team and their help had an immensely positive effect. They are not saying that cbt will cure m.e or that it does not have a biological basis what they are doing is trying to help people to manage their illness and prevent the horrible boom and bust cycle. I now manage and understand my illness much more and think that early intervention is vital to prevent the damage done by poor management.

  13. Hey Rosie, I agree, early intervention/diagnosis is essential to prevent people from overdoing it and making themselves worse – as I most certainly did in 80s – but how on earth is helping people ‘change the way they see themselves’ relevant’?

    I would honestly be very afraid of any ME therapist with that philosophy.

    And in spite of many years of illness, I have achieved what I have *precisely* because of the way I see myself! I do not need my self-perception changed by anyone, least of all not therapists with psychosocial leanings.

    Although, as I said, I could have done with being told *not* to push myself as much as I did, not to fight the illness in early days. I may not still have ME now to the extent I do, had I known not to push.

    Still, I would be afraid of anyone who suggests I can build up stamina – no, I can’t. I can rest and pace and manage my symptoms, but there is no utopian upward curve, I’m afraid.

    I wish you well and am glad things have eased for you.

  14. Hi nmj

    I think the problem is that so many people have misunderstood and badly treated people with m.e that sometimes what people say is now assumed to be negative. I think what they mean by change how you see yourself is to accept that you have an illness and to adapt your life accordingly rather than rush through it as we both did. I have actually found via I have had a steady increase over the last two years from ten percent to ninety percent without relapses, although I only reached ten percent due to over doing it for the first two years. I think sometimes when you have spent time bed bound they do need to build up their stamina. There is no easy fix and the symptoms are still horrid but for me they have got steadily less severe and less frequent and I’m actually going to study occupational therapy in September. Although I know each person’s experience of m.e is different and I think that more than one illness may be included within m.e. For the record people with m.s are also taught how to manage their energy levels and to pace themselves and its far from common sense as it’s very difficult to be that controlled.

  15. The IACFS/ME letter summary of the O’Dowd et study of the Frenchay paper: didn’t include the following (excerpted from the O’Dowd et al paper):
    “Group CBT did not significantly improve
    cognitive function, quality of life (as measured by
    the physical subscale of the SF-36), employment
    status or healthcare utility measures. However, the
    quality of the data obtained for the last item was
    too poor to be used in any analysis.”

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