Article by Paul Worthley

strategist said:
In short, omnibabble.
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I like @strategist's new word!

Omnibabble = reframing a folk psychological explanation in "biological" terms without actually significantly altering the causal claim.

e.g.
"Stress and worry can destabilise the HPA axis, leading to chronic illness"
"People who are in chronic pain exhibit greater activity in brain areas associated with pain perception"
 
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JohnTheJack said:
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.
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Sometimes you just need a "like x100" button!
 
TiredSam said:
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.
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The Goop effect. n. The phenomenon whereby self-confidence obtained from attainment, adulation or accolades in one field overgeneralises to another, entirely unrelated field. deriv. Actress Gwynneth Paltrow's company Goop, specifically the line of "wellness" products it markets.
 
TiredSam said:
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?
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This.

Without a ‘cure’, a ‘whole-person’ approach (body-mind-spirit) is invaluable
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In covering your arse, perhaps. But otherwise, fuck off with your hippie new-age bullshit. :grumpy:
 
In my view this is gross over simplification and likely wrong too. I'm surprised at this from a dr with experience of severe ME, Jessica Taylor was In burrswood a long time.

Regarding two areas seriously affecting the severe
1) light sensitivity and cognitive dysfunction. From my reading there are over laps with concussion where light and noise sensitivity I've seen put down to hyper excitability of parts of brain and inability to filter as it shouldd, these have also been mentioned in ME. Explaining the requirement to be in a dark room because of a locked fight or flight phenomena.... like wise the cognitive issues can get severe, and explaining it as the body redirecting resources in F & F when it could be much more ... it might make vague sense in the mildly ill, who then think what they need is reflexology, but not when you look down the line of severity. Interestingly from what I read on concussion and post tbi there's talk of cellular energy crisis, mitochondria impact, free radicals, inflammation, ion and axon dysfunction - all things we have heard in ME - and none of which show on normal MRI.
2) unable to relax muscles again because of fight or flight
In severe ME some people are on baclofen , the same anti spasm med used for MS, our hands can go into the typical Neurological claw, our limbs contort, It seems we have hypertonia, which perhaps in the mild cases can just feel like a vague inability to relax.

I'm very surprised this same basis probably talked of by chalder, Gupta , Phil Parker etc with just a different treatment approach i.e. CBT, Gupta , LP or pacing is being put out as science in 2018.
Also the idea the stressed and dysfunctional body /SNS just needs to be reassured " all is well" , that activity is ok in a gradual way, what evidence for that explanation and is that a risky message to send to parents via AFME. If you have a sick child where T cells are going loopy, energy metabolism is impaired and you work on the basis that the problem is a locked hyper SNS state that can be retaught and healed via pacing & GAT, isn't that an issue?
 
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Thank you @hellytheelephant for describing your experience at Burrswood. It sounds like a very affirming and positive one in terms of diagnosis and being believed, which are both very important. I'd love to spend time in a beautiful environment being looked after like that. But, as you say, it's not a cure or even a treatment. At its best, it's respite care. And thanks for the update that it's not a hospital any more.

I think there is a need for places like this that provide support, care and belief in the patient's experience, and whatever symptomatic medical treatment and personal care is needed, especially for those severely and very severely affected, as a respite from the often far from ideal living situations many of us have, and to help explore and stabilise symptomatic treatments and assess ongoing support needs.

The only option now seems to be nursing homes that are geared towards elderly and dementia care, languishing at home without sufficient care, or noisy, busy unsuitable acute medical or psychiatric hospitals which make pwme worse.

Edit to add: but it shouldn't come wrapped in psychobabble, even of the most apparently benign sort.
 
Trish said:
But, as you say, it's not a cure or even a treatment. At its best, it's respite care.

I think there is a need for places like this that provide support, care and belief in the patient's experience, and whatever symptomatic medical treatment and personal care is needed, especially for those severely and very severely affected, as a respite from the often far from ideal living situations many of us have, and to help explore and stabilise symptomatic treatments and assess ongoing support needs.

...but it shouldn't come wrapped in psychobabble, even of the most apparently benign sort.
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This is what I find so frustrating. White, Wessely, Chalder, Crawley, etc all take the illness seriously and have found ways to help some people manage the effects of their symptoms. That is not negligible. If only only they'd stopped there then they would have done some good.

They have always insisted though that there is just 'chronic fatigue' and that what they are doing is treatment. The two are connected, of course, because to admit there is ME would be to acknowledge the possibility that they are only treating CF and helping some ME patients manage the effects of their illness.

But of course, then there wouldn't have been decades of research and policy-making.
 
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Somebody I know was in Burrswood a few years ago after being very severely injured in a car crash. She was there for rehabilitation and had a lot of physio to get her moving again. Very caring people and a lovely place. I think they have done a lot of very good work.
As far as their treatment for ME goes it's the same old problem - they had to operate using the NICE guidelines.
 
April said:
Somebody I know was in Burrswood a few years ago after being very severely injured in a car crash. She was there for rehabilitation and had a lot of physio to get her moving again. Very caring people and a lovely place. I think they have done a lot of very good work.
As far as their treatment for ME goes it's the same old problem - they had to operate using the NICE guidelines.
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For what reason though? It's private, not NHS.
 
Jonathan Edwards said:
Or in this case metabolo-immuno-multisystemo-mind-body-spirito-autonomobabble.
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strategist said:
In short, omnibabble.
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I thought we already had a short word that covered it. Woo.

From RationalWiki: https://rationalwiki.org/wiki/Woo

Woo, also called woo-woo, is a term for pseudoscientific explanations that share certain common characteristics, often being too good to be true (aside from being unscientific). The term is common among skeptical writers. Woo is understood specifically as dressing itself in the trappings of science (but not the substance) while involving unscientific concepts, such as anecdotal evidence and sciencey-sounding words.
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JohnTheJack said:
This is what I find so frustrating. White, Wessely, Chalder, Crawley, etc all take the illness seriously and have found ways to help some people manage the effects of their symptoms. That is not negligible. If only only they'd stopped there then they would have done some good.

They have always insisted though that there is just 'chronic fatigue' and that what they are doing is treatment. The two are connected, of course, because to admit there is ME would be to acknowledge the possibility that they are only treating CF and helping some ME patients manage the effects of their illness.

But of course, then there wouldn't have been decades of research and policy-making.
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you forget all their major incomes came from an insurance company who has paid members of the psychiatric profession to deny illness other than mental health as professional witnesses do you not think their whole outlook on diseases was skewed in order to justify their parasitic/self centred greed.
 
So imagine you are in a tropical jungle, all alone, at dusk, and you need tofind your way through to a place ofsafety. Muscles are constantly ready to run, and so never fully relax. If this state of affairs continues, night and day, it can lead to significant muscle pain and fatigue. Blood flow is diverted away from the stomach to the muscles, and so digestive processes are interrupted, causing Irritable Bowel-like symptoms and the muscles begin to feel heavy and tender. Senses too are heightened, as the slightest sound or movement could spell danger, so many people with M.E. are sensitive to light and sound. In the jungle one acts from instinct, watching out for danger. The cognitive part of the brain plays second fiddle, while the instinctual part takes the lead, thus cognitive problems and brain fog are common.
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Another one who seems to have no proper understanding of the condition he is an 'expert' in.
Sensory sensitivity in ME has nothing whatever to do with SNS activation. At least not in whatever is wrong with me.
The reason i am so certain of this is that i have had PTSD. I am intimately acquainted with what fight of flight feels like, and it's nothing like the sensory processing difficulties experienced in ME, at least in whatever I am suffering from that has been dx as ME. If ME is as he describes then I don't have it.

Indeed when I am actually in fight or flight my sensory difficulties diminish... DIMINISH... drastically. At moments of peak anxiety/danger it is a physical relief, because I can tolerate 5-10 times the sensory input as I can when relaxed. I can also do more, and my thinking is MORE alert, sharper & the fog disappears. I have told that to umpteen doctors over the years, they seem incapable of hearing it.
:banghead::banghead::banghead::banghead:

What I find most frustrating is that Doctors, researchers & the like, they cant seem to recognise that ME needs a category of it's own, a new pigeon hole. Pattern recognition seems to override their ability to actually hear what's being said - so strong that they just have to fit what we describe into things they already know about.
 
No, ME/CFS patients aren't in constant fight or flight mode. Hypersensitivty or sensory problems aren't the same thing as fight or flight mode.

Even when I had marked POTS and tachycardia I wouldn't describe it as fight or flight mode despite the same stress hormones being involved. The body is much more nuanced than this reductionist view. Such comparisons just create confusion.
 
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