Article by Paul Worthley

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"

 

Sometimes you just need a "like x100" button!

 

Is anybody actually in "chronic brain"? and if so can they tell me.......

or am I missing something - possibly brain related?

 

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.

 

fixed, I'm sorry to say.... but maybe I should have left it up for a laugh...

 

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?

 

Disappointing that AFME was allowing such drivel to be published in their magazine as recently as this year.

 

ME Trust Facebook post linking to the article.

 

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.

 

For what reason though? It's private, not NHS.

 

Her treatment was paid for by an insurance company. Some ME patients who went there were funded by the ME Trust. Any doctors working there would still have to use NICE guidelines if they want to keep their registration.

 

I thought we already had a short word that covered it. Woo.

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

 

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.

 

It's head-messing mind games.

 

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.


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.

 

I think there's an unmentioned elephant in that jungle.

 

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.