• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

PACE re-analysis and NICE guidelines

trishrhymes

trishrhymes

Senior Member
Messages
2,158
Well I've had my reply from my MP. No more or less than I expected. I've been slapped in the face by a wet fish. I don't think it's worth my wasting any energy pursuing it. If anyone wants to see my letter to him, it's here as a blog post.

Dear Mrs Davis,

Thank you for your email of 15th September. I am sorry for the delay in responding to you, but my Secretary was on leave last week.

I am afraid I do not believe that the best interests of patients with ME would be served by any attempt to base treatment on something other than the world-class evidence-based approach to clinical effects that is applied by the National Institute of Health and Clinical Excellence (NICE) to the evaluation for all proposed treatments for all conditions in the NHS.

With best wishes,

Yours sincerely,

Oliver Letwin

[RT HON SIR OLIVER LETWIN MP]
 
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
First of all, thank you @trishrhymes , for taking the time and effort to write to him. Your letter was impressive (link for those who want to read it again http://forums.phoenixrising.me/index.php?entries/letter-to-my-mp-about-magenta-and-nice.2014/).

Writing to our MPs will be a long-haul mission if we are to get results. I wrote to mine recently about him attending the All Party Parliamentary Group on ME and merely got a reply stating that he wasn't able to attend sent by his secretary, so at least the reply you got seems to suggest your MP wrote it himself.

Just off the top of my head, if you do feel up to replying to him at some point, you could point out that not only are top scientists calling the "world-class evidence-based approach" used by PACE as complete rubbish (see David Tullers analysis and the open letter sent to, I think, QMUL) but also the the U.S. Agency for Healthcare Research and Quality (AHRQ) has declared that there is no evidence that CBT and GET are worthwhile treatments (http://forums.phoenixrising.me/index.php?threads/ahrq-evidence-review-changes-its-conclusions.46229/).

Just my suggestions, only take them on if you are able to. And, the thought just struck me, maybe a letter writing thread could be useful - I know I find the thought of finding the 'right' words daunting, as well as dealing with the inevitable rejections that will follow - I might start one up.
 
trishrhymes

trishrhymes

Senior Member
Messages
2,158
AndyPR said:
And, the thought just struck me, maybe a letter writing thread could be useful - I know I find the thought of finding the 'right' words daunting, as well as dealing with the inevitable rejections that will follow - I might start one up.
Click to expand...

Thanks for the support Andy, it means a lot after getting such a cold and callous reply to a very personal and detailed letter. Please do start a thread so we can support each other in our efforts to get the message through to power. I will probably write back as you suggest, though not for a few days.
 
BurnA

BurnA

Senior Member
Messages
2,087
trishrhymes said:
Well I've had my reply from my MP. No more or less than I expected. I've been slapped in the face by a wet fish. I don't think it's worth my wasting any energy pursuing it. If anyone wants to see my letter to him, it's here as a blog post.

Dear Mrs Davis,

Thank you for your email of 15th September. I am sorry for the delay in responding to you, but my Secretary was on leave last week.

I am afraid I do not believe that the best interests of patients with ME would be served by any attempt to base treatment on something other than the world-class evidence-based approach to clinical effects that is applied by the National Institute of Health and Clinical Excellence (NICE) to the evaluation for all proposed treatments for all conditions in the NHS.

With best wishes,

Yours sincerely,

Oliver Letwin

[RT HON SIR OLIVER LETWIN MP]
Click to expand...

Do you have this MPs contact details, maybe we could all write and email him.
 
trishrhymes

trishrhymes

Senior Member
Messages
2,158
Countrygirl said:
Just realised that the 'Gutless Wonder' is my neighbouring MP. If only I lived a few miles further east, @trishrhymes and I could orchestrate a pincer movement on Letwin.

He has a PhD for his thesis on Emotions......for what that little gem is worth.
Click to expand...

Eton, Oxford, PhD, Rothschild's bank, MP, conservative policy director....
And he's announced he's standing down at the next election, presumably to make pots of money in banking.
Why would he bother with the likes of us.

Thanks for the support everyone. I knew I was on the road to nowhere when I wrote my letter, so I'm not really upset.

Edit: Don't let this put you off writing to your MP's. There are some decent ones around.
 
Last edited:
BurnA

BurnA

Senior Member
Messages
2,087
trishrhymes said:
Eton, Oxford, PhD, Rothschild's bank, MP, conservative policy director....
And he's announced he's standing down at the next election, presumably to make pots of money in banking.
Why would he bother with the likes of us.

Thanks for the support everyone. I knew I was on the road to nowhere when I wrote my letter, so I'm not really upset.

Edit: Don't let this put you off writing to your MP's. There are some decent ones around.
Click to expand...
You should write again with a copy of the reanalysis as per the original protocol and ask him his opinion .
 
Stewart

Stewart

Senior Member
Messages
291
BurnA said:
You should write again with a copy of the reanalysis as per the original protocol and ask him his opinion .
Click to expand...

And send him a copy of Julie R's article, highlighting the quotes from Jonathan Edwards and Ron Davis.

You could then gently point out to him that when a Professor Emeritus of Medicine and the Director of Stanford University's Genome Technology Centre make such damaging criticisms of a study underpinning NICE guidance, he surely has an obligation as an elected representative to take the matter seriously. You could politely ask him to forward your correspondence to his colleague, the Secretary of State for Health, and to send you a copy of the reply he receives.

You might get another brush-off - or he might forward the letter on to the DoH, just to appear reasonable. But given how dismissive his reply was - and after you'd clearly put so much effort into your letter - I can understand why you might feel it isn't worth the effort.
 
trishrhymes

trishrhymes

Senior Member
Messages
2,158
Thanks BurnA and Stewart for helpful suggestions. I've been letting off steam by casting the villains of the piece as characters from Harry Potter (see thread in Member's Lounge). I think Oliver Letwin is Cornelius Fudge who simply denies that the death eaters exist because he doesn't want to know.

I'll think about writing to him again. I certainly have more ammunition than I did a few days ago, with the new re-analysis of the recovery data and Julie R and Margaret Williams' damning pieces. Trouble is, I know I'll get nowhere.

Maybe it's time to bring out the secret weapon and threaten to reveal the fact that he double claimed for energy bills on his expenses and managed to hide this during the expenses scandal thanks to an eagle eyed constuent who pointed it out to him and didn't go public. He can't deny it, since I was that constituent. More fool me. He was certainly quick to react that time when I wrote him an e-mail.
 
Stewart

Stewart

Senior Member
Messages
291
trishrhymes said:
Maybe it's time to bring out the secret weapon and threaten to reveal the fact that he double claimed for energy bills on his expenses and managed to hide this during the expenses scandal thanks to an eagle eyed constuent who pointed it out to him and didn't go public. He can't deny it, since I was that constituent. More fool me. He was certainly quick to react that time when I wrote him an e-mail.
Click to expand...

What!?! You did him a huge favour like that and he now dismisses your concerns out of hand? The cad!

I don't think you need to explicitly threaten to reveal his dirty secret. You just need to 'innocently' drop into your letter that you were the person who 'helpfully' brought the issue with his energy bills to his attention, and you're surprised that on this occasion he appears dismissive of your concerns, especially given your past correspondence. He's a clever man - he can put two and two together... :)
 
You must log in or register to reply here.