United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

Absolutely!

It is bizarre how he doesn't seem to be aware how bad he looks, exposing his lack of knowledge and expertise in this way.

And what about fully informed consent.....how can that be achieved if doctors are themselves so ill informed?

 

The more I think about what Hammond said, the more I see the need for more adherence to suitable guidelines not less.

Hammond makes it sound like he's prepared to try all sorts of things including cold showers and anti virals and goodness knows what .... based on anecdote.

Yet for every anecdote of something helping I can virtually guarantee there's an anecdote of the very same thing harming. True to type he's only listening to the anecdotes that support his perception.

This kind of thing is precisely why these kind of things should not be done outside properly designed trials (with the correct ethical approval & oversight). The clinics have been notoriously bad at monitoring what they do. This is simply experimenting for the sake of it. Worse still, experimenting on children.

I really hope the powers that be at NICE read his twitter feed.

 

Yes, but I'm not very active on Twitter.

 

Excuse me if I have wrongly assumed and lost the plot, but my understanding was that the NICE was set up specifically to AVOID individulalisation and in effect to bring equity and equality of service and approach across the country? Ie. NO MORE POST CODE LOTTERIES?I am sure I have this written up in my notes which I took to the Engagement/Scope Meetings. I will look it out!

 

https://en.wikipedia.org/wiki/National_Institute_for_Health_and_Care_Excellence

ICE was established in an attempt to end the so-called postcode lottery of healthcare in England and Wales, where treatments that were available depended upon the NHS Health Authority area in which the patient happened to live, but it has since acquired a high reputation internationally as a role model for the development of clinical guidelines.
Clinical guidelines
NICE carries out assessments of the most appropriate treatment regimes for different diseases. This must take into account both desired medical outcomes (i.e. the best possible result for the patient) and also economic arguments regarding differing treatments.

 

I didn't read his comment as being a list of therapies he was willing to try, but rather he was noting what he has heard pwME have been willing to accept as potential treatments with little to no science behind the theory, and that in comparison the CBT/GET offered in NHS clinics is a safer, more effective option . . . except that it isn't.



Er . . . no.

 

In the online version of his article he said:

"I have met people with ME/CFS who are desperate for answers and experiment with low-dose naltrexone, [long list of stuff], solution focused hypnotherapy, the Lightning Process, the Perrin technique, an anti-inflammatory diet, cold showers and more. We need to
know if any of these work, and in what circumstances."

 

My bad, I didn't see the quote in it's entirety.

 

More choice quotes.... re NICE

Criticism
The work that NICE is involved in, attracts the attention of many groups, including doctors, the pharmaceutical industry, and patients. NICE is often associated with controversy, because the requirement to make decisions at a national level, can conflict with what is (or is believed to be) in the best interests of an individual patient. ….....


NICE has been criticised for being too slow to reach decisions. On one occasion, the Royal National Institute of Blind People said it was outraged over its delayed decision for further guidance regarding two drugs for macular degeneration that are already approved for use in the NHS. However the Department of Health said that it had 'made it clear to PCTs that funding for treatments should not be withheld simply because guidance from NICE is unavailable'.[33]

…........

A Conservative shadow minister once criticized NICE for spending more on communications than assessments.

In its defence, NICE said the majority of its communications budget was spent informing doctors about which drugs had been approved and new guidelines for treatments and that the actual cost of assessing new drugs for the NHS includes money spent on NICE's behalf by the Department of Health. When these were added to NICE's own costs, the total cost of the technology appraisal programme far outstrips the cost of NICE communications.

 

I guess we could say that's progress. At least he's trying. Has he ever even acknowledged PEM before recently? It's very late to learn the basics of one's expertise, even decades into it... But damn are the standards low that this is actual progress, of sorts.

https://twitter.com/user/status/1431574567131156481

https://twitter.com/user/status/1431573570010890240

 

Doesn't seem to be very good at connecting the dots does he .

I get the feeling he is being very reactive, and trying at every turn to position himself on the winning side, as he scrabbles to learn a bit more about what he has professed to understand for many years.

 

Me wonders whether those powerful people have found another useful idiot to engage with us in Dr Phil (a la Prof Garner) who will turn around and stab us in the back when his masters say enough of being nice to them, let’s use their interaction with you against them. Look out for his Private Eye column.

 

Ah well, when Dr Phil says GET we have no way of knowing what he means by GET do we?

He claims he doesn't recognize the GET other doctors' patients describe.

We can't even safely say what he meant by GET a week ago will mean the same thing next Wednesday.

I'd call it a pile of manure by any other name but.....manure is useful stuff when used correctly. Like everything else, used incorrectly it'll do more harm than good.

Whereas GET, even the purest form used by the experts in PACE showed it did no good at all.

 

Interestingly he is now saying we can’t just ‘snap out of it’..

Am not sure if he is genuinely trying to be helpful or like Prof Garner, who was equally helpful at some point, about to do an volte face and say we are raging nutters.

I sadly don’t trust him having seen his Twitter feed over a number of months (not just on ME)

 

One can probably only adopt a "wait and see " approach and be neither critical nor supportive until issues become clearer.

 

Cognitive dissonance is one hell of a drug.