UK House of Lords/ House of Commons Questions

Perhaps - do we know if she has asked anything about ME before?
Sometimes I suspect asking a question this way might be a better way to get a direct answer?
Time will tell no doubt.

 

Maybe ... but it would mean she needs to get up to speed and soon.

I'm hoping she is actually being savvy, and hoping to force the government to clarify its position re PACE treatments. Governments' normal get-out-of-jail squirmy responses are to state what they are doing ... they can never state they are not doing anything. Which may mean her question will force them to say what they are doing - PACE treatments? Or something else?

 

So we don't know if her question is ignorant or fiendishly clever
I hope she responds to the emails, thanks to those that sent them

 

misread that as 'knobbed'

 

I've had a reply from Theresa Villiers, which clarifies she is asking the question because a constituent raised the issue. She does say she has no real understanding of PACE. I have thanked her for her honest reply, and included some information I hope might spur her to learn more. A link to the Hansard transcript of Carol Monaghan's debate; a link to the much-signed open letter; and a link to the JoHP special edition, pointing out @Jonathan Edwards' contribution as a good starting point.

It may all fall on stony ground, but then again it might not. It would be great if she decided to dig deeper and wanted to get to the truth.

 

Merged thread
Theresa Villiers MP asked the Secretary of State for Health and Social Care if the NHS could roll out more 'PACE treatment' for people with myalgic encephalomyelitis.

Can someone in her constituency point out that it's pacing we want, not PACE? We don't want ill-informed politicians setting us back.

https://www.theyworkforyou.com/wrans/?id=2018-03-08.131736.h&p=11500

 

Steve Brine

The National Institute for Health and Care Excellence (NICE) guideline Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy):

Diagnosis and management of CFS/ME in adults and children, published in 2007, sets outs best practice for clinicians on the diagnosis, treatment, care and support of people with the condition and assists commissioners in planning services for local populations. The guideline recommended cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as appropriate treatments for mild to moderate CFS/ME, in line with the best available evidence. In 2011, NICE considered the results of the PACE trial, which also looked at CBT and GET, and concluded that they supported its existing recommendations on these treatments.

The NICE guideline acknowledges that there is no one form of treatment to suit every patient and that treatment and care should take into account the personal needs and preferences of the patient. Decisions concerning the approriateness of treatments should be made on a case by case basis, and in dicussion with patients and their familes or carer, if appropriate.

On 20 September 2017, NICE announced its decision to undertake a full update of this guideline, following a review of the latest available evidence on the diagnosis and management of CFS/ME and a public consultation. More information on this decision can be found at the following link:

http://www.nice.org.uk/news/article...ance-on-the-diagnosis-and-treatment-of-cfs-me

 

So the question wasn't answered! Yes or No??
Doesn't even say plans will depend on out come of NICE review.
Hmmmmm

 

Also, pacing isnt treatment. It doesnt help anyone recover, pacing can help prevent us getting worse. Other factors are involved in deterioration too, so pacing isnt a guarantee to avoid deterioration.

The Pace trial was cynically named 'PACE' to fool people, especially patients, that the study was about pacing.

 

from the merged thread
It may have come up in another thread but I think it deserves its own thread, @adambeyoncelowe! Often, new things crop up in long-running discussions that need flagging up in their own right. Perhaps if you add the MP's name and constituency to the title, their constituents will notice and will start writing in.

 

from the merged thread

Thanks - quoting for people who don't click through:

 

from the merged thread

Also from the other thread posted by me
"Have just emailed her to say we don't want the 'therapies' recommended by the PACE trial, that in fact we want them removed from the NICE guidelines now, and sent her a link to the petition."

eta: it might be easier just to read the other thread

 

Steve Brine

Under the terms of their contract with NHS England, general practitioner practices are required to keep adequate records of the attendance and treatment of all their patients, including those who have been diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

 

He's answered a different question; not quite the one that was asked; hoping no one would notice.

eta - perhaps the question should have been more explicit.

 

Reply in about the YELLOW CARD system.

Hmmmmm.... okay so where next?

It would seem to me that all interventions funded by NHS and approved by NICE should be covered by a Yellow Card system of some sort.

I'm going to talk to my MP Jim Shannon about this again.

What sort of question do you think he should ask next, in order to push for harms from ALL interventions being collated?

Perhaps he needs to ask how harms from CBT & GET can be appropriately reported?

 

ask what mechanism there is for reporting harms from non pharmaceutical etc treatments.

 

Yes @Sbag I was thinking since writing that post that we should take it beyond GET/CBT. Thanks.