Sly Saint

Senior Member (Voting Rights)
Taken from a blog originally from 2011 but the comments go on to 2018;

Saturday, 3 September 2011
The Hospital Appointment...

so a little while ago I went back to my GP and said, please help me, I've been diagnosed with a chronic illness, which prevents me functioning in every part of my life, and to date all I've been provided with is 12 weeks CBT (Cognitive Behavioural Therapy). So they sent a letter requesting another appointment with the consultant at the Royal Free. (Dr Gabrielle Murphy)

I had been scheduled to see her again in October- their standard, we see our patients regularly appointment (Once per year).

I have been looking forward to the appointment for some time, although admittedly the evening before and day of the appointment I was nervous about it. I looked for the letter to check the times etc of the appointment, but couldn't find it. (I'm usually a person who is organised but I simply cannot do that at the moment, it's as much as I can do to open letters and read them, putting dates into my diary). I also sought the results of my blood test that they originally did, but was unable to find them either.

I figured they'd have the results on file, and was fairly sure I'd written the correct time in my diary.

I arrived at the hospital at 3.25pm, reported to reception that I had an appointment with Dr Gabrielle Murphy, I was informed that they no longer used that clinic, and that I would need to go down to ICDC on the ground floor. I asked for directions to get there, when I got to the ground floor there was no mention of ICDC on the big sign with all of the departments, so I asked the main reception. Oh, the "Ian Charleson Day Centre, you mean?" "I guess so", I replied. I was given further, more accurate instructions and found the "ICDC".

I reported to reception, saying I had an appointment at 3.30pm with Dr Gabrielle Murphy, "take a seat" was the response. "Um, do you not want to take my name, so that she knows I'm here?" I was somewhat flustered by the off the cuff "take a seat".

"No, they don't have a reception service, so you just take a seat and they will come out to see you."
so I took a seat...

The time was now 4.25pm.

The nice woman came back a few minutes later, and explained that Dr Gabrielle Murphy was in clinic 6 upstairs, and that I would need to go up to see her.

I cried. I'd been waiting for an hour, in pain and discomfort, having asked to confirm that I was indeed in the correct place, and now I was being told that I wasn't. That the appointment I'd waited weeks to get, I was now over an hour late for, and that I had to now walk further to get to see the consultant.
She continued to look through my file... "Well you say CBT wasn't any use for you, there is nothing else we can do for you."

She told me that should couldn't help me, because funding was restricted to one choice of therapy only, and I'd chosen CBT. And that she couldn't make any exceptions, because if I told anyone in the fatigue community, then everyone would want a 2nd course of treatment...

I asked, if money was no object, what course of treatment would you recommend, her response "Graded Exercise Therapy".


other comments:

Anonymous28 August 2013 at 15:56
I too have seen this doctor - finally after her clinic lost my file for a year but refused to accept this - and found the treatment useless. She is a fan of Wessely and refused to accept CFS as a biomedical condition.

Jenny Blyth15 July 2016 at 20:32
I had nearly the same experience today although she was in ICDC. Accused me of lying, told me my incredible GP was incompetent and basically bullied me out the door with a 'nothing I can do'. I had graded exercise and although good it hasn't helped me greatly. Very informative but not much else. She told me of that didn't work nothing will.

Unknown23 June 2017 at 14:42
I have had two appointments with Dr Murphy...
..On being told that my insomnia is dreadful and I suffer pain at night, she offered to prescribe amyltriptiline. I explained I had taken it before and put on 2 stone, and that being overweight is bad a) for my health and b) in terms of being taken seriously by medical professionals. She agreed with me but declined to recommend anything else.

I told her I had had no success with CBT and thet GET had made me bed ridden for 6 months. She said 'well what do you think I can do for you then?'

She then suggested a further course of CBT

in the interest of being equipoise, a more positive comment (although Dr Murphy knew that the patient was a medical student):

I saw Dr Murphy in May 2017 (only time I met her during my treatment, the rest of the time I saw other members of the team. They offered me both Graded Exercise Therapy and CBT). She did seem to take my physical symptoms seriously, and we went through a full history and symptom review. She also confirmed I had had glandular fever in the past (my trigger) and also the presence of thyroid antibodies. She answered my questions and listened to what I had to say. Also we discussed the pathology of CFS/ME (she knew I was a medical student) and did not imply to me she thought the disease was psychological.

full blog here:
http://itsallaboutmememeandme.blogspot.com/2011/09/hospital-appointment.html

eta: another NICE guideline committee member

eta2: (note also BACME member, and one of the medical advisers [another one is Esther Crawley] for Sussex and Kent ME/CFS Society [aka measussex])

eta3: she was the Chair of BACME
 
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Royal Free Fatigue service:

Why do fatigue symptoms persist?
We do not know the cause of CFS/ME, but the Royal Free London fatigue service can address the factors that cause fatigue symptoms to persist, and reduce their impact on everyday life.

Some of the factors that cause fatigue symptoms to be ongoing are:

  • physical weakness: we can lose 10% of our muscle power from just a week in bed
  • disturbed sleep patterns may lead to dizziness/headaches
  • relapse brought about by excessive activity in a period when a sufferer feels better
  • weight changes alter stamina levels, making it hard to maintain levels of activity
  • a disturbed sleep pattern makes it difficult to feel refreshed
  • anxiety and depression affect energy levels, motivation and confidence
  • CFS/ME causes frustration, and a sense of being isolated or feeling misunderstood, which can aggravate pre-existing anxiety or depression.

    CFS/ME sufferers often try to compensate these symptoms by resting more or sleeping longer which results in prolonging fatigue rather than easing it.

What chronic fatigue treatment does the Royal Free London provide?
Our specialist fatigue team provides a range of treatment options for chronic fatigue syndrome/ME.

Treating ME symptoms with cognitive behaviour therapy (CBT)
Cognitive behaviour therapy identifies behavioural patterns that may be contributing to your chronic fatigue. You and your therapist set your own goals which gradually increase activity levels, explore sleep difficulties, help manage worry, and identify negative behaviour.

Chronic fatigue relief: Graded Exercise Therapy (GET)
Graded Exercise Therapy decreases physical and mental fatigue, and can alleviate fatigue symptoms giving you more energy.

GET helps stabilise your daily activity to limit the ‘boom and bust’ cycle of exerting yourself when you’re feeling better and lets your body physically adapt. It focuses on your needs and covers; sleep pattern, strengthening and relaxation, setback planning and goal setting.

Activity management (AM) to treat ‘boom and bust’ activity
Activity management also aims to help you break the ‘boom and bust’ cycle of activity. It teaches you strategies to help you manage your ME symptoms, such as balancing activity and establishing activity baselines, effective rest, improving your sleep, body mechanics and ergonomics.

This therapy is goal-directed and our fatigue team ensures your objectives are regularly reviewed.

Royal Free London medical care for chronic fatigue symptoms
The Royal Free London fatigue team may provide medical care reviews to discuss new or altered fatigue symptoms, and the impact of other conditions you may have with your CFS/ME.

Where required, drug treatment for problems like sleep or mood disorders may be recommended.

Evidence shows that patients who are committed to consistent therapy achieve better results.

https://www.royalfree.nhs.uk/servic...e-service/chronic-fatigue-syndrome-treatment/

eta: good job they didn't take this approach with the original
'Royal Free outbreak' .... they clearly haven't learned from their own history.
 
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There is no biological marker for this disease which produces physical distress, overlaps depression (particularly when low thresholds for that diagnosis are set), and is associated with occupational handicap. However, doctors have a range of skills to help patients with biological, psychological, and social problems. These can be used to help patients with CFS depending on individual need. It is unnecessary and indeed unproductive to force patients into unsuitable diagnostic categories as a condition for treatment. It may be more productive at present to define problems with patients and help to plan problem-solving measures with them.

Read together with the above comments about Murphy, this quotation from a 1991 paper shows just how Wessely and co have boxed in their colleagues with CBT and GET, and the loss of flexibility and professional judgment that has resulted.
 
Evidence shows that patients who are committed to consistent therapy achieve better results.

Or put another way:

Evidence shows that when a therapy fails to produce results, patients demonstrate a reduced commitment to continuing with therapy.

Wonder why that would be? How can they honestly tell the difference?
 
How many cancer patients continue with chemotherapy that isn't working? As usual blame the patient, not the therapy.
This isn't what the post-war Labour government intended for the National Health Service. The NHS structure as presently constituted provides zero incentive to help patients, let alone make them well. It provides every incentive to get along within a rigid, stagnant bureaucracy. Bureaucracies in general are vulnerable to being led by persons lacking in empathy (this has been reported in serious psychological research.) Ergo the NHS structure enforces lack of empathy, in particular to any thing or person that is non-conforming. So this unkind, narrow-minded and incurious woman is a well-paid big cheese. And you only get one option for care! So if a doctor makes an error on the first go round you are doomed......This is unethical as well as illogical. I've never before heard of doctors so lacking in interest of getting people well.
 
There is no biological marker for this disease which produces physical distress, overlaps depression (particularly when low thresholds for that diagnosis are set), and is associated with occupational handicap. However, doctors have a range of skills to help patients with biological, psychological, and social problems. These can be used to help patients with CFS depending on individual need. It is unnecessary and indeed unproductive to force patients into unsuitable diagnostic categories as a condition for treatment. It may be more productive at present to define problems with patients and help to plan problem-solving measures with them.

Read together with the above comments about Murphy, this quotation from a 1991 paper shows just how Wessely and co have boxed in their colleagues with CBT and GET, and the loss of flexibility and professional judgment that has resulted.
May we know the bibliographical reference for the 1991 paper please?
 
May we know the bibliographical reference for the 1991 paper please?

Sorry. I expired before making my point. A constitutional failing. And my intended epitaph.

Journal of Infection (199I) 23, 263-269

Biopsychosocial aspects of chronic fatigue syndrome (myalgic encephalomyelitis)

J. D. I. Yeomans* and S. P. Conwayt * Department of Psychiatry, Roundhay Wing, St James's University Hospital, Beckett St, Leeds LS9 7 TF and t Department of Infectious Diseases, Seacroft Hospital, York Road, Leeds LSI4 6UH, U.K.

https://sci-hub.tw/10.1016/0163-4453(91)92864-2
 
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Moderator note: new thread moved from Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al




Looking at AFME YouTube content I came across this talk in 2014 in Sussex from Gabrielle Murphy. It’s sound only no slides but she seems to be going on on the same lines as Pariente. Probably many will already be aware - it’s linked to from her ME Pedia page. Just thought it would be useful context here but happy for mods to delete if too far off thread.
 
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In case anyone watching it missed it, halfway through, before going into the explanation of 'how it all works' (leading to chronic fatigue) her preferred model is 'psychoneuroimmunology', she says
"What we believe in the psychoneuroimmunological model is............"
 
Given that's she's chair of the BACME and running the London Fatigue Clinic, she's also basically got 2 stakeholders to feed back as too - so her views are also in the 10 year surveillance report and other stakeholder consultations

According to her Esther Crawley's FITNET-NHS has something to do with ME & CFS. Despite using the Oxford criteria. Alarmingly Esther's still recruiting kids for GET.
 
More on 'Psyhoneuroimmunology' can be found on pages 167 - 172 of this book https://cdchester.co.uk/wp-content/uploads/2018/05/SUSANA1.pdf
The Cambridge Handbook of Psychology Health & Medicine.

the book has a chapter on CFS & is discussed in this thread https://www.s4me.info/threads/cambr...-chapter-on-cfs-from-chalder-and-cairns.7582/

I'd be most interested to get your take on the chapter on PNI @Jonathan Edwards , if & when you have time, or indeed any of our other immunology literate members... I wonder how accurate it is, how reliable the studies quoted are etc.
 
Gabrielle Murphy wrote the ME Awareness post on May as Chair. If she has quit then I'd say it's purely for the NICE guidelines and does nothing to convince me that she is any less connected than before.

Esther Crawley was chair when appointed to the last guidelines panel.
 
@Sly Saint can you confirm Mike Beadsworth is on the Executive of the BACME too?
I'm sure I saw that recently. I know he was at the AGM.

I don't know what other BACME roles he holds but I noticed they have a Liverpool & Mersey group, and he was "local host" at the Changing Times conference in Liverpool.
 
@Sly Saint can you confirm Mike Beadsworth is on the Executive of the BACME too?
I'm sure I saw that recently. I know he was at the AGM.

I don't know what other BACME roles he holds but I noticed they have a Liverpool & Mersey group, and he was "local host" at the Changing Times conference in Liverpool.
He was but I have been unable to find out who exactly are on the current executive (since their last agm).

It said in the minutes "The executive officers are proposing a change to the structure of the BACME Executive. Currently there are up to 26 members of the executive."

They seem to be a very secretive bunch.
 
I'd be most interested to get your take on the chapter on PNI @Jonathan Edwards ,

It is drivel. There is no need to implicate 'psychological' causation in any major immune response, whether beneficial or deleterious. There may be slight shifts of this and that but this chapter is full of complete bullshit about Th1 and Th2 responses. The authors are perhaps not aware that this sort of paradigm faded out twenty years ago and never had any evidence base anyway.

This is pseudoscience. The sad thing is that so much that passes for received wisdom these days is this rubbish.

I could not here clearly what Murphy was saying on the video on the other thread. I gave up when she started taking nonsense about Descartes. I have recently published a chapter on Descartes's contribution to our understanding of the place of mind in physics. It is a pity that the BPS people do not take the trouble to find out the most basic of things they waffle about.
 
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