Article by Paul Worthley

J

JohnTheJack

Senior Member (Voting Rights)
This was apparently in the @Action for M.E. journal earlier this year.

https://www.metrust.org.uk/2018/07/06/article-by-dr-paul-worthley-in-interaction-magazine/

I don't know anything about Worthley or the ME Trust, though I see Countess of Mar is a Patron.

It reads to me as very similar to Parker's nonsense on the Lightning Process discussed in another thread.

It is yet another attempt to use pacing as treatment rather than symptom management and then uses a 'mental and spiritual' to switch off a 'hyper-state'.

It's just CBT-GET in a different guise. And with some 'spiritual' guff thrown in on top.

It uses all the key words 'real', physiological', etc just as White and Crawley do.

In my view it's yet more BPS nonsense.
 
He seems to be saying that ME is entirely caused by the body being 'stuck in the flight of fight' response. Is there any physiological evidence for this? And his treatment, as @JohnTheJack says, is rest and relaxation of body mind and spirit to allow the body to switch back to normal. If only it were that simple.
 
I might actually be stuck in a fight-or-flight response due to all the BS of this kind.

I think they are confusing disease activity that involves increased sympathetic nervous system tone with a stuck fight-or-flight response. A fight-or-flight response is just one of multiple reasons for sympathetic nervous system activation. It's the same kind of error that leads patients with POTS, which involves sympathetic nervous system activation, to be misdiagnosed with anxiety.

I'm pretty sure a large number of chronic diseases are associated with increased sympathetic nervous system activity as part of the body's reaction to illness.
 
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JohnTheJack said:
I don't know anything about Worthley or the ME Trust, though I see Countess of Mar is a Patron.
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Their founder's bio:

Hannah Clifton
Hannah is a former London solicitor. She became ill following a trip to the Far East. She was given a vague diagnosis of ‘probable ME’ by her doctor who also advised her not to tell anyone the diagnosis ‘because there is a stigma attached to it and people will think you have something psychologically wrong with you’. That was the only advice he gave her. The second doctor said, ‘Well, you probably know more about this than I do. What would you like me to do?’ By the third doctor, she was bedbound.

Hannah was ill for over 12 years, spending many of those years bedbound and in great pain. Throughout that time her G.P’s advised her that no hospital bed was available on the NHS. She was provided with just 13 weeks of social services care. Her private health insurance did not cover ME. The initial ‘probable diagnosis’ was eventually confirmed many years later. Her GP at that time had feared she may have an undiagnosed brain tumour or MS.

In May 2008 Hannah was told by her GP that she ‘probably’ would not recover. That month she travelled to a private hospital where Dr Paul Worthley had pioneered a service for people with ME/CFS. Within a month of being admitted she was well enough to begin walking along the hospital corridor.

Hannah founded the ME Trust with the aim of bringing life transforming treatment, care and support to people with ME/CFS.
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It seems so odd to me that a magazine for patients would publish an article that seems to me to speak about patients in such a patronising way.

eg: "I like to start by listening, and
believing in the patient, affirming
their story and reassuring them that
they are not going mad and there
are genuine physiological/
biomedical problems causing their
symptoms."

Do most Action for ME members read that and think 'that sounds good'?
 
strategist said:
I might actually be stuck in a fight-or-flight response due to all the BS of this kind.

PS: as amateur I think they are confusing disease activity that involves increased sympathetic nervous system tone with a stuck fight-or-flight response. A fight-or-flight response is just one of multiple reasons for sympathetic nervous system activation. It's the same kind of error that leads patients with POTS, which involves sympathetic nervous system activation, to be misdiagnosed with anxiety.

I'm pretty sure a large number of chronic diseases are associated with increased sympathetic nervous system activity as part of the body's reaction to illness.
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Yes.

Its a sort of reverse inference fallacy. There are a whole family of them, and its time we took them to task.

"anxiety induces heightened sympathetic nervous system activity, therefore heightened sympathetic nervous activity is an indicator of anxiety"

"Depression and low mood can cause fatigue, therefore fatigue is indicative of depression"

"anxiety can cause stomach upsets, therefore stomach upset indicates anxiety".

"the anterior cingulate cortex is activated when we experience pain, therefore abnormally heightened activation in that area is a marker of pain catastophisation."

"the dorsolateral prefrontal cortex is activated when people try to suppress some habitual response or other. Therefore, if there is activation in that area in an FND patient, its means they are actively suppressing some body movement"
 
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So many 'experts' who are all talk and no trousers. They pick and choose tiny little nuggets of biomedical information and use them as a foundation to pile heaps of fluff and manure on to. They tell us they're listening when they're not, and then make up fabrications about our bodies, our minds and our lives. They then use that as a basis to build a fluff and bullshit mix of a solution. It's unfair really that I'm saying this in this thread as this man isn't the worst offender by a long chalk, but reading this is the another one of those last straws and I'm too wacked to go and *find Parker or the BPS Gang threads.

I'm not sick because of fight or flight. What makes this man think that I don't know what fight or flight in my own body feels like. I'm not a 2 years old.

*edit : a helpful person pointed out that my original phrase could be wilfully misconstrued and misused by unfriendly persons so I changed it.

edit : typo
 
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April said:
Burrswood hospital
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"We offer a range of health care, social care and wellbeing services including physiotherapy, hydrotherapy, occupational therapy, psychotherapy, counselling, nursing care and chaplaincy at our wellbeing centre. Delivered in inpatient and outpatient settings and in our church, all located within a beautiful and tranquil environment in Groombridge in the heart of the Kent and Sussex countryside."

"
Situations where counselling and psychotherapy can be helpful include:

  • Grief and loss (Bereavement)
  • Depression
  • Anxiety
  • Panic disorder
  • Phobias
  • Compulsive and emotional eating
  • Relationship difficulties
  • Health related problems
  • Low self esteem
  • Loneliness
  • Body image issues
  • Abuse
  • Chronic Fatigue Syndrome
  • Work related stress
  • Anger management "
now you can't seriously tell me they believe ME/CFS is a biological/physical illness(?)
 
Sly Saint said:
"We offer a range of health care, social care and wellbeing services including physiotherapy, hydrotherapy, occupational therapy, psychotherapy, counselling, nursing care and chaplaincy at our wellbeing centre. Delivered in inpatient and outpatient settings and in our church, all located within a beautiful and tranquil environment in Groombridge in the heart of the Kent and Sussex countryside."

"
Situations where counselling and psychotherapy can be helpful include:

  • Grief and loss (Bereavement)
  • Depression
  • Anxiety
  • Panic disorder
  • Phobias
  • Compulsive and emotional eating
  • Relationship difficulties
  • Health related problems
  • Low self esteem
  • Loneliness
  • Body image issues
  • Abuse
  • Chronic Fatigue Syndrome
  • Work related stress
  • Anger management "
now you can't seriously tell me they believe ME/CFS is a biological/physical illness(?)
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Hi- just to add in my experience:

Firstly, Burrswood is NOT a hospital any longer, it is a retreat and rehabilitation centre. I was among the last patients when I stayed in May 2016 for 2 weeks.

I have a strong interest in holistic healing, and am a Christian, so was very appreciative of being given grants to go there. It is a beautiful place and I had all the tests for deficiencies, other conditions, so for the first time I actually felt properly diagnosed.

The staff were unbelievably kind and understanding of the limitations of having ME. I felt very supported and everything was done for me ( as you would expect of a private hospital), I was not pushed beyond my limits, and nothing about it was like the lightening process!!!! There was no psycho babble, or any implication that I do not want to get well, or that my attitudes about anything need to change. Counselling was offered and I was happy to do that, and it was tailored to the daily stresses and griefs of a life of being really ill. There was no sense of digging around looking for the 'cause' of my having ME.

It was a revelation to be understood and treated like the seriously ill person I am, by medical staff!. I also really gained a lot from a spiritual perspective.

BUT...I did not get well...and in fact I am worse since then.

My non-recovery is not due to any lack in Dr Paul or any other staff there.
The truth is that ( at the time of writing) there is no cure for this illness, and however kind, supportive or understanding, there is at present no way to facilitate a cure. That is why Jen Brea amongst others is campaigning for more research.

I believe Dr Worthley is officially retired, but still helps some patients.

Helly
 
Woolie said:
Yes.

Its a sort of reverse inference fallacy. There are a whole family of them, and its time we took them to task.

"anxiety induces heightened sympathetic nervous system activity, therefore heightened sympathetic nervous activitty is an indicator of anxiety"

"Depression and low mood can cause fatigue, therefore fatigue is indicative of depression"

"anxiety can cause stomach upsets, therefore stomach upset indicates anxiety".

"the anterior cingulate cortex is activated when we experience pain, therefore abnormally heightened activation in that area is a marker of pain catastophisation."

"the dorsolateral prefrontal cortex is activated when people try to suppress some habitual response or other. Therefore, if there is activation in that area in an FND patient, its means they are actively suppressing some body movement"
Click to expand...

Yes, that's right.

I hate the deceit:

'Yes, your illness is real.' But then we think hysteria is a real illness.

'Yes, it's triggered by a virus.' And by 'trauma' and anything else come to think of it.

'Yes, it's physical and there are physiological changes.' But we're not dualists and everything is 'physical' and everything shows physiological changes.

They pick up on all the words patients use and adopt them. The CBT-GET crowd do, Crawley does, Worthley is here and Parker's gibberish is based entirely on it.

It's intellectually dishonest.
 
JohnTheJack said:
This was apparently in the @Action for M.E. journal earlier this year.

https://www.metrust.org.uk/2018/07/06/article-by-dr-paul-worthley-in-interaction-magazine/

I don't know anything about Worthley or the ME Trust, though I see Countess of Mar is a Patron.

It reads to me as very similar to Parker's nonsense on the Lightning Process discussed in another thread.

It is yet another attempt to use pacing as treatment rather than symptom management and then uses a 'mental and spiritual' to switch off a 'hyper-state'.

It's just CBT-GET in a different guise. And with some 'spiritual' guff thrown in on top.

It uses all the key words 'real', physiological', etc just as White and Crawley do.

In my view it's yet more BPS nonsense.
Click to expand...

Sounds like Gupta.
 
I like to start by listening, and believing in the patient
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Is there a difference between "believing the patient" and "believing in the patient"? I expect to be believed. I don't give a toss whether my doctor believes in me, that's my mother's job.

and reassuring them that they are not going mad
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Thanks, but I never thought I was, where did you get that idea from?

Too many people with M.E. have suffered for too long, misunderstood, alone, disbelieved and with little support.
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Yes, we know, get on with it.

It appears that for many people with M.E., the SNS has been sensitized and has become stuck, like a broken record, in fight and flight mode, even when supposedly resting or sleeping. Whatever the original trigger, the brain switched to fight and flight to fend off this perceived life-threatening attack - but never switched back. To use a metaphor ...
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Oh, there's a metaphor on the way is there? I'll watch out for that, I hadn't noticed any yet.

To use a metaphor, it is as if the foot is hard down on the accelerator pedal in a stationary car, with the gear in neutral;
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If that's a metaphor, would you mind telling me what a simile is?

Trying to push through the energy and pain barriers only reinforces the unhealthy fight and flight response
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Surely if I'm in a fight and flight response I should be able to fight or take flight, otherwise, what's the point? Whereas with ME the opposite happens, my ability to fight or take flight is vastly diminished. Perhaps we should compare it to something else or find another explanation?

The hope is that with pacing, one can begin to build positive experiences of mobility and activity, no matter how small, which give positive feedback to the central nervous system, reassuring it that all is well, and that it no longer needs to stay on fight and flight. Working from a baseline of activity, within one’s own limits, can help reassure the SNS and allow the restorative and healing PNS to become more active once again.
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One of us has completely misunderstood pacing. And I've been doing it for four years like my life depends on it, so I don't think it's me.

The first step in the management of M.E. is establishing true rest (physically, mentally and spiritually)
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I just said a very rude word.

Perhaps the greatest challenge of all for people with M.E.!
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Why the exclamation mark? Did someone just tell a joke? An attempt at self-deprecation or philosophical whimsey?

This ‘tropical jungle’ metaphor in no way explains all that has gone wrong in M.E., but does give an insight into how small changes in our physiology can cause devastating and widespread symptoms.
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It's a simile, and you just made it up, so you can't cite it as a source of insight into physiological changes.

Without a ‘cure’, a ‘whole-person’ approach (body-mind-spirit) is invaluable
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Oh please, I expect more from a doctor. Go and be a life coach or something.
 
TiredSam said:
Oh please, I expect more from a doctor. Go and be a life coach or something.
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I think that is the level of support that is indicated by this kind of approach.
It's not medicine. Mind/body/spirit is all very well but when you are this desperately ill it requires a little something extra.

Sounds lovely as a retreat for the mostly well.
 
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Snowdrop said:
I think that is the level of support that is indicated by this kind of approach.
It's not medicine. Mind/body/spirit is all very well but when you are this desperately ill it requires a llittle something extra.

Sounds lovely as a retreat for the mostly well.
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I don't think there's anything wrong with seeking spiritual support whether you are well or ill if that's what you're into, I'd just like to see a strict separation between spirituality and medicine. This guy seems to think that because he's a doctor, that entitles him to branch out into the "mind-body-spirit" realm and be acknowledged as an authority on such matters. If I wanted that I'd have gone to a priest or an aromatherapist or life coach or guru or checked myself into a wellness weekend or whatever.

alktipping said:
tired sam be honest I would bet there was more than one rude word spoken during your correct assessment of this sales pitch .
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Your sixth sense is uncanny. You could make some money with that ;)
 
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