UK academics view ME differently to US says NICE spokesman

[Cinders66]

Tbh I just read through the entire correspondence exchange and my overall reading was that the NICE officials were following the foreign political developments in tbe field, indeed it seemed to be the only thing changing them. Because of it they are reviewing in 2017, not 18, they are well aware and influenced by the various important American reports, especially the 2015 IOM report and even discussed a possible name change and are aware that in the USA GET & CBT are far less heralded. The strong pro PACE pro CBT lot were mentioned who hopefully are on shake ground here.
Noticeable was how these detatched officials felt the field had got nowhere and wasn't likely to soon, very bleak analysis which should Shame uk officials in charge of research and funding

 

[Ysabelle-S]

Part of the problem is the arrogance and egotism of the British establishment. It's quite a small world, and they can close ranks as we've seen with other scandals. It also sometimes feels as if there's a wall around the British Isles, and information from outside often doesn't penetrate the way it should. It's not so much ordinary folk on the internet but the media and establishments who are, for whatever reason, out of touch, insular, or in some cases just plain in denial.

 

[Daisymay]

The arrogance, ignorance and complacency of the British establishment is appalling and embarrassing.

 

[Yogi]

Vive la Grande Bretagne! I recommend that this policy - of prioritising UK expertise over that of foreigners - be immediately accepted in all domains.

Policy to have immediate effect in the areas of wine-making, food sales and restaurants, central heating, the car manufacturing industry, customer service practices, and of course plumbing (particularly shower attachments).

I can imagine Prof Mark Baker drives (or gets someone to push him because it's always breaking down) around in his British Leyland to the offices of NICE in London. The only and last British car manufacturer which went bust because the cars were so crap and even everyone in Britain bought foreign cars.

I can imagine Mark Baker uses his trusty British BBC (British Broadcasting Corporation) Acorn to get the latest research on ME.

Mark Baker probably doesn't use those foreign japanese mobile smartphones or american iPhones and relies on dependable British made phones by British Telecom to call his"esteemed" colleagues at the Royal Colleges for the latest advances and cutting edge science into CBT and exercise.

I dread to think what dinner is like at Mark's place before all that foreign influence came over to these shores.

 

[Woolie]

I dread to think what dinner is like at Mark's place before all that foreign influence came over to these shores.

 

[Barry53]

He seems to have his head stuck firmly in the sand

Something like that, anyway.

 

[Forbin]

The importance of insularity, staying the course and CBT (for false arrow beliefs) all in one video!
[Warning: Some dispassionate violence, death.]

Aguirre, the Wrath of God (1972)

 

[JamBob]

Part of the problem is the arrogance and egotism of the British establishment. It's quite a small world, and they can close ranks as we've seen with other scandals. It also sometimes feels as if there's a wall around the British Isles, and information from outside often doesn't penetrate the way it should. It's not so much ordinary folk on the internet but the media and establishments who are, for whatever reason, out of touch, insular, or in some cases just plain in denial.

None of this surprises me. Thyroid patients have been fighting the UK medical establishment for decades, but they are so arrogant - they won't admit there's a problem or that they have anything to do with the problem.

A few years ago they released "guidelines" (with great fanfare to all the GP publications and journals) with zero references and no named authors which amounted to little more than their "opinions". They stated that nobody has thyroid disease unless their TSH is over 10 and that levothyroxine is the only treatment for all patients (even though this isn't a physiological replacement for what's missing). When we complained to the RCP they held a sham "review" but wouldn't tell us who was doing the "review" (obviously not an independent person) and still refused to name the authors of their "guidelines" or provide references to back up their assertions. Around that time they started quoting Wessely using his studies as "evidence" that patients who complain about treatment are just moany old women who won't accept that they are really mentally ill as levothyroxine is a wonderful replacement drug that resolves all symptoms of hypothyroidism.

For years they claimed there hadn't been any RCTs so therefore they would only recommend Lthyroxine. Then when a US RCT was finally carried out (that showed positive results for NDT for a large minority of patients) they started saying there weren't enough RCTs. Yet when they want to make a pronouncement, they do so without any evidence at all (yet alone an RCT). So you can't really win.

The Royal Colleges and specialty medical Societies are charitable organisations and don't come under the FOI act so they do everything behind closed doors and hold sham patient engagement sessions (where they only recruit yes-ladies who suck up to doctors and tell them what they want to hear). It's a joke.

If I ever get better ME-wise - I am sooooo going to start a patient revolution. In the meantime, I go abroad for secondary care.

 

[Cheshire]

Around that time they started quoting Wessely using his studies as "evidence" that patients who complain about treatment are just moany old women who won't accept that they are really mentally ill as levothyroxine is a wonderful replacement drug that resolves all symptoms of hypothyroidism.

Wow, once again, Wessely's "studies" used to dismis patient's concerns. Do you have links?

 

[RogerBlack]

In some ways a review not until later in 2017 might almost be a positive.
We absolutely don't want a (hopefully soon to be published) peer reviewed paper on the PACE trial reanalysis to be left out.
Plus, if the rituximab trial comes out in the mean time, and is significantly positive, ...
In some ways more interesting than the patient results of a rituximab trial might be pre/post trial omics testing of responders and non-responders.

 

[Daisymay]

In some ways a review not until later in 2017 might almost be a positive.
We absolutely don't want a (hopefully soon to be published) peer reviewed paper on the PACE trial reanalysis to be left out.
Plus, if the rituximab trial comes out in the mean time, and is significantly positive, ...
In some ways more interesting than the patient results of a rituximab trial might be pre/post trial omics testing of responders and non-responders.

Good point, however on the other hand people will potentially be harmed with CBT/GET in the meantime.

 

[Jan]

Good point, however on the other hand people will potentially be harmed with CBT/GET in the meantime.

Which is why I think 'treatments' like Get & Cbt should be suspended until a full review can take place.

 

[Jo Best]

The rituximab papers won't be published until 2018 I don't think, and knowing the politics, that could be a prompt for NICE bringing forward the date when they consider whether to remove ME/CFS from the static list. It's also possible NICE will be guided to keep the guideline on the static list pending the MEGA study, in the same way they previously delayed review to await publication of the PACE trial. The MEGA study would take years to yield evidence to warrant updating the NICE guideline so that would do nicely. These are just thoughts based on what's gone before.

 

[slysaint]

John Snow, the guy who linked cholera to the a well in London in the early 1800s

I watch him on Channel 4 news, didn't realise he was that old.

 

[worldbackwards]

Tbh I just read through the entire correspondence exchange and my overall reading was that the NICE officials were following the foreign political developments in tbe field, indeed it seemed to be the only thing changing them. Because of it they are reviewing in 2017, not 18, they are well aware and influenced by the various important American reports, especially the 2015 IOM report and even discussed a possible name change and are aware that in the USA GET & CBT are far less heralded. The strong pro PACE pro CBT lot were mentioned who hopefully are on shake ground here.
Noticeable was how these detatched officials felt the field had got nowhere and wasn't likely to soon, very bleak analysis which should Shame uk officials in charge of research and funding

I generally get the feeling that Baker is agnostic and waiting for something to happen. Which is less than great but could be a lot worse.

New head of the RCP next year, lets hope it's in time for the review - basically just being hung out to dry by someone else, but I wouldn't want to give Sir Simon the satisfaction.

 

[JamBob]

Wow, once again, Wessely's "studies" used to dismis patient's concerns. Do you have links?

The main proponent of the psychosomatic school (as explanation for patient dissatisfaction with thyroid replacement treatments) is Tony Weetman who is an ex Head of the British Thyroid Association.

Whose thyroid hormone replacement is it anyway? A. P. Weetman Clinical Endocrinology (2006) 64, 231–233
http://www.medscape.com/viewarticle/524955

He writes that: "The majority of patients who demand thyroid hormone treatment for multiple symptoms, despite normal thyroid function tests, have functional somatoform disorders, which in the postmodern world can understandably be misdiagnosed as hypothyroidism. Yet we inside medicine are not even sure how best to classify somatoform disorders, let alone explain them to patients, and this broad diagnostic label has many shortcomings. In particular (i) the terminology is unacceptable to patients; (ii) the classification supports the Cartesian dualism that somatic symptoms can be either ‘organic’ or ‘psychogenic’; (iii) these disorders do not form a single category, although some have argued that there is a significant overlap which may well have therapeutic if not aetiological relevance; (iv) such a diagnosis is socially and culturally dependent and (v) there is considerable unreliability and ambiguity in defining the diagnosis.3 A paradigm shift in our categorization of somatoform disorders has been proposed recently, with a recommendation to return to a far less dualistic approach.4 This shift is based on evidence that functional neuro- logical changes can be identified in some patients with somatoform disorders, and there is therefore a compelling case for a different approach using a ‘psychologically augmented medical consultation’. " And it goes on....

Weetman does cite Wessely in his references but that relates to his article on Healthism, actually it is M Sharpe whose psychobabble work Weetman references.

In the video below Weetman was promoting his ideas in the USA where he was a guest speaker for the American Thyroid Association (they gave him a prize and put him on their Committee). I hadn't looked at this video for a couple of years but interestingly enough at around 27 minutes he starts praising the PACE trial as a "fantastic" and an "absolutely robust" trial to these American endocrinologists.

2013 Challenges of Therapy Dissatisfaction with Thyroid Hormone and Somatization Disorder

I might be mistaken but I think there was a big outcry among thyroid patients recently as the ATA launched new guidelines that promoted somatisation or some such as a reason for why thyroid patients are dissatisfied with their treatment. I have to check that though.

 

[SilverbladeTE]

Thanks I didnt know that - fascinating !

shows the arrogance, ignorance and stupidity of our medical Establishment has NEVER CHANGED to this day
alas it's the bad side of Human Nature, see way horrible things have come out in politics, finance and religion as proof of this

The real enemy to ordinary people is not the terrorist, the Russians, British. Americans or whoever's "side",
no, it's almost always their own bloody "Establishment" and Elite :/

the Establishment *must* be destroyed for us to live.
We need leaders, not fat cat moribund moronic "bosses"
massive difference between someone who will lead, and those who enjoy/lust for power

Pick folk at random, put them in charge for a few years only, never ever allow anyone with power to get "dug in"
like diapers, leaders should be changed regularly
but also the entire system needs constant clean ups as the corrupt and hidebound ALWAYS push out the conscientious, hard working and decent as they are a threat to the schemes of the scumbags

Without honest oversight, we've reached the situation where a HANDFUL of sick, twisted, depraved, corrupt BASTARDS have warped medical research, the compassion of the physician and needs of the desperately ill, into their own personal LYING fiefdom's, where they can spew lies that lets millions of people be prevented form having medical treatment and thus thousands die horribly every year because of them
and they set things up so the drug companies can force drugs down folks throats who DON'T NEED THEM
and of course, these SHYTEBAGS get honours, accolades, and all kinds of junkets and excursions funded by health insurance and pharmaceutical corporations, who'd a thunk it?

there is no damned difference between that kind of crap and what the Nazis, Soviets or Inquisition got up to.
it's only tempered by the culture and times, hence UK being more humane we haven't been shot in the back of the head or tossed into gas chambers for being "malingerers"...but we are STILL being *MURDERED* by the State's own bloody hand, they just dont' have the balls to be upfront and honest about it like the S.S. or N.K.V.D. thugs

If PACE is fraud, and PACE was the thing backed by the Wesselyites and the British State as *policy*, then it's deliberate genocide by those in power.​

It's so insane, evil and stupid I can't help but laugh darkly and think of the "Chewbacca Defence", which is what I think they'll kind of use to evade the gallows...oh sorry, we don't execute folk any more, except the disabled and those the State finds "annoying pests".

 

[SilverbladeTE]

Yogi
if you know the history of how British Leyland etc actually screwed it up yeah it does show the mind-set
forcing the former private manufacturers together was a disaster because the MORONS wouldn't work together, they went out of their way to sabotage the ex-rival's car designs, supply of motors etc
absolutely outrageous stupidity
and they nearly murdered my mother because of it

she had an Austin Allegro, she was disabled and car was handcontrolled
note my mother was the first female civilian to pass the Strathclyde police's driving test and she did it in a HAND CONTROLLED car, at that! she was an excellent driver
so, one day coming home over a narrow country bridge...which stood over a 100' deep gorge and very very twisty road/hill, the damn car's suspension buggered up and drove her right into another car, which at least stopped her going over the bridge
she couldn't drive again after that as it worsened her spinal damage
lots of people died because of those terrible cars, since it wasn't genuine honest deign/manufacturing accidents but result of deliberate sabotage, refusal to fix problems etc, all those deaths are murder

see also US car firms
laet 60s early 70s two of them think it was Ford And GM had a secret agreement to use their political power and orders to designers to prevent the uptake and laws of having seatbelts fitted especially for passengers...to keep their costs down
at that time in history, each year 100,000+ Americans were killed on the roads, a Hiroshima bomb EVERY year of mostly unnecessary and avoidable deaths
but perfectly acceptable to those with power.
Seatbelts are for Plebs, who cares how many children are ground to pulp in accidents because the Elite all go in fancy armoured limos with chauffeurs! Better they day than spend a penny on wasteful seatbelts!

I saw the result of a particularly terrible car crash, ore wagon rolled right over top of a car full of people and kids....
I get VERY angry how wilfully blind society is that only terrorist bombings and hard drugs and the like are seen as "tragedies" we need to fight, but the constant carnage on the roads and other things such as alcohol deaths...don't matter a damn.

sigh

 

[SilverbladeTE]

I watch him on Channel 4 news, didn't realise he was that old.

oooooh!!!
*rimshot*
good one

 

[Daisymay]

Which is why I think 'treatments' like Get & Cbt should be suspended until a full review can take place.

Absolutely!