ALL Countries Please sign the MEA's new petition to NICE:do not classify ME as 'functional'

[Vonjones]

I wrote to a neurologist in the 90s (whose name annoyingly I cant remember as so long ago) as think he had an advice leaflet, and he sent me a copy saying that there was nothing physically wrong and patients needed to accept that a biomedical cure would never be found!
I replied I was astonished that a scientist could say such a thing as absence of proof is not proof of absence.

 

[alex3619]

gibberish

Bonus points for use of the word "gibberish". I love that word.

 

[alex3619]

I replied I was astonished that a scientist could say such a thing as absence of proof is not proof of absence.

But were they a scientist? Some doctors are very much scientists, but I currently think that is a small minority. I would like to see that change.

 

[Countrygirl]

5,500!!

 

[Countrygirl]

6 000!

 

[Countrygirl]

6 500!

 

[Countrygirl]

7 000!!

 

[Barry53]

Bonus points for use of the word "gibberish". I love that word.

Sounds like one of those words that mimics the noise it describes (especially if repeated over and over), as might be expected from gibbering idiots . One of my favourite words also.

 

[Daisymay]

I have just had an interesting conversation with my wife.

I was under the impression that Andrew Dillon was a doctor. That meant that if he was going to be resistant to seeing the PWME side of things there might be pretty little chance of changing his mind. Doctors are like that.

It is shocking how so many doctors don't change their minds, how rigid they are in their thinking. They like to think of themselves as scientists but so many of them don't think like scientists. It seems as if a large proportion of doctors function like establishment parrots maintaining the status quo, irrespective of the scientific evidence.

 

[Demepivo]

*Dr Phil Hammond has tweeted his approval...He is a colleague of Esther Crawley at the Bath paediatric ME/CFS centre

*Previously he has written about the PACE trial in his Private Eye column

https://twitter.com/i/web/status/913792120175161344

 

[Countrygirl]

7,500!!

 

[charles shepherd]

*Dr Phil Hammond has tweeted his approval...He is a colleague of Esther Crawley at the Bath paediatric ME/CFS centre

*Previously he has written about the PACE trial in his Private Eye column

https://twitter.com/i/web/status/913792120175161344

Dr Phil Hammond CV:

http://www.drphilhammond.com/blog/

>>

My NHS work is as part of a specialist NHS team in Bath, treating young people with Chronic Fatigue Syndrome/ME, based at the Royal National Hospital for Rheumatic Diseases in Bath. Details of the service we offer are here Good advice on accessing specialist CFS/ME services and treatments available can be found via the AyME website (for people up the age of 25) and the Action for ME website (for those over 25)

I might go and see him when he comes to the Sub Rooms in Stroud next week!

CS

 

[Robert 1973]

Dr Phil Hammond has been responding to questions about Esther Crawley and the ME/CFS service he provides.

https://twitter.com/i/web/status/913809357875367936

https://twitter.com/i/web/status/913837078798053376

https://twitter.com/i/web/status/913821484153491456

https://twitter.com/i/web/status/913837950001205248

https://twitter.com/i/web/status/913839324864684032

 

[Robert 1973]

https://twitter.com/i/web/status/913837494059307008

https://twitter.com/i/web/status/913889722044420096

 

[Countrygirl]

8 000!!

 

[Binkie4]

Another MP, Ed Davey, has signed and accepted the invitation to the showing of 'Unrest'.

 

[slysaint]

"Dr Phil Hammond ✔ @drphilhammond
But all our patients with CFS/ME have post exertional malaise"

So what exactly is their definition?

The MEGA team have yet to come up with a description.

The NHS say:
"The main symptom of CFS/ME is feeling extremely tired and generally unwell......
Exercising usually makes the symptoms of CFS/ME worse. Sometimes the effect is delayed and you'll feel very tired a few hours after you've exercised, or even the next day."

NICE just says:"characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days) "

?

 

[Demepivo]

Dr Phil Hammond CV:

http://www.drphilhammond.com/blog/

>>

My NHS work is as part of a specialist NHS team in Bath, treating young people with Chronic Fatigue Syndrome/ME, based at the Royal National Hospital for Rheumatic Diseases in Bath. Details of the service we offer are here Good advice on accessing specialist CFS/ME services and treatments available can be found via the AyME website (for people up the age of 25) and the Action for ME website (for those over 25)

I might go and see him when he comes to the Sub Rooms in Stroud next week!

CS

After you've introduced himself, bonded as medical professionals and given a decent a suitable non pushy interval you might suggest he updates his website

The tweets maybe aren't maybe entirely to our taste but at least he engages with patients and does not accuse them of harassment for asking legitimate questions.

 

[Large Donner]

He needs to be tweeted over the PACE trial protocols etc and respond to why Crawleys thinks 30-40% of people recovered from it - they didn't!!

I'm also sick of hearing how "exercise" can help people. Why cant they understand the difference between exercise and managing exertion including activities of daily living. I'm so sick of hearing it called exercise, its not. Exercise is what I would be doing in my spare time by going to the gym for an hour or swimming for an hour or walking for an hour or hiking or riding a bike on top of living a normal life with normal amounts of exertion if I was not ill.

Also he doesn't seem to be saying anything about the severe group of ME in his response about "a cluster of illnesses" and how doing LP on tired teenagers cannot be extrapolated to a neuro immune disease.

Exercise is a powerful intervention. Get the dose right, it can help some people. Get it wrong, it can cause harm. Which is why it is graded

That's called pacing. It's definitely not GET as prescribed by the BPS crowd and its not why its called graded. Graded exercise therapy is from the false notion that gradually increasing exercise in an "exercise phobic" person RECOVERS people from ME.

If he is claiming to practice it differently in his clinic he should be calling it pacing. On top of that he has also admitted in that tweet that GET can harm people.

This is just another slight of hand by calling pacing GET whilst still claiming pacing failed in the PACE trial.

 

[Invisible Woman]

The game of semantics again:

GET as they deliver it shows no evidence of harm in one text. When by definition GET will hurt pwME who suffer post exertion malaise.

So perhaps he could define what he means by the following terms:
1 GET
2 Harm
3 PEM
4 the criteria he uses to diagnose ME

Then he says that he call it's graded because if you get the "dose" wrong it will cause harm. Is he then implying I tell one patient to do this much and another to do something else? The word graded meaning different levels for different people. Cause I've never seen it used like that before.

So:
5 define graded