[UK]Anna Turley MP writes to Jeremy Hunt about ME.

[AndyPR]

This has popped up on Twitter -

https://twitter.com/i/web/status/836974567407091712

Given that it's such a brilliant letter for us I'd encourage UK people to get in contact with her to express our thanks.
anna.turley.mp@parliament.uk
https://twitter.com/annaturley
https://www.facebook.com/Anna4Redcar/

 

[Jo Best]

Well done @sproggle Thanks to Margaret Laverick and Anna Turley

 

[alex3619]

Its a good letter, but the agencies and people involved have a quandary. First, do they defer to the NICE reviews, and say these matters are likely to be discussed in the next review? Second, what alternative treatment is there? Ampligen is not approved, and Rituximab is still in phase 3 trial. Staph vaccine was withdrawn from the market. What does that leave that might actually work?

Some time next year I think we will have the first alternative, and more to follow.

We can ask them to stop using ineffective and dangerous treatments. We cannot yet ask them for alternatives. More social and medical support, and more attention to treating secondary symptoms, is about all we can expect for at least a year from now.

 

[suseq]

Huge 'Thank You' to Anna Turley, MP and all involved in this and other advocacy.

The misleading commentary and psychologisation of our illness must end.

As the increasing bio-medical evidence shows, it is not 'medically unexplained' or 'functional' in the sense it is portrayed within the BPS model by those with vested interests.

We deserve to be treated with the respect and dignity afforded to anyone who suffers an illness of any kind and receive appropriate care that does not cause harm.

 

[tinacarroll27]

We can ask them to stop using ineffective and dangerous treatments. We cannot yet ask them for alternatives. More social and medical support, and more attention to treating secondary symptoms, is about all we can expect for at least a year from now

I think you are right! considering the risk of GET they should stop all graded exercise been offered to patients ASAP because it can cause so much damage. Even if NICE is reviewing the situation and there is no treatment offered at this time, there are still things they could do to help.. just been believed is a big step. As for CBT, they should only offer it to help support people like with other illness, not to over come false illness belief.

 

[arewenearlythereyet]

I'm not sure whether she will thank the ME community for making her look ill informed? This looks like the over emotive letter that was supposed to accompany the Myhill book campaign. Rather than demanding alternative treatments that doesn't exist yet it should have more explicitly asked for the current "treatment" to be withdrawn with immediate effect due to the potential harm it could cause patients. That would have then left the door open for further letters demanding more research and a rewrite of the nice guidelines to be brought forward.

 

[BurnA]

The letter doesn't explicitly mention alternative treatments, although it could be interpreted that way.

Although it is poorly worded at the end I think the message is good.

Instead of "worried that doctors will continue to not be able to give adequate treatment options" it should just have said "worried that more patients will be harmed by these treatments."

"treatment they deserve" is an odd choice of words, but if it means treatment based on science rather than pseudoscience then it does have some legitimacy.

 

[Esther12]

I possible errors: 1) I'm not sure that it is clear that ME is an auto-immune disease of the nervous system 2) NICE does give the option of pacing 3) the NICE guidelines came out before results from PACE were released.

I know it's hard, but it would be good to try to get all the details right on things like this.

 

[Jo Best]

The letter doesn't explicitly mention alternative treatments, although it could be interpreted that way.

Although it is poorly worded at the end I think the message is good.

"treatment they deserve" is an odd choice of words, but if it means treatment based on science rather than pseudoscience then it does have some legitimacy.[/QUOTE]
Quoting as I agree with your reply. This is a letter from an MP, based on concerns raised by a constituent (who happens to be a parent/carer of someone with severe ME), it's not a specific Parliamentary Question or an Early Day Motion requiring support, so it's open to interpretation and discussion with the recipients, specifically references the debunking of the PACE trial and is asking what steps are being taken as opposed to insisting on what those steps should be. The reply is probably predictable but it opens the way to further lobbying for change.

 

[Aurator]

I suspect it will elicit a very short reply at best, the thrust of which will be how CBT/GET are "evidence based" and therefore the best "treatments" available at present.

 

[AndyPR]

I suspect it will elicit a very short reply at best, the thrust of which will be how CBT/GET are "evidence based" and therefore the best "treatments" available at present.

Very true but that is the long, drawn out battle that we face. The important thing is that this MP thought it was important enough to write the letter, not the reply that we will get at the moment.

 

[Jo Best]

A former MP for this constituency, prompted by the same parent/carer, was responsible for eliciting the announcement of ring-fenced funding of £1.5m (later increased to £1.6m) by the MRC. I'm grateful to all those parents battling with perseverance over the years against the odds for their children with this disease.

 

[TiredSam]

We can ask them to stop using ineffective and dangerous treatments. We cannot yet ask them for alternatives.

Well one alternative would be for doctors to recommend rest, explain the dangers of the push/crash cycle, and give accurate advice on how to pace.

 

[alex3619]

Well one alternative would be for doctors to recommend rest, explain the dangers of the push/crash cycle, and give accurate advice on how to pace.

There are indeed management options, especially pacing. Accurate information provided to doctors is a public health plan, but it would have major impact. The inaccurate information they have available can be harmful. However these are about managing the disease effectively, not about really treating it. The possible exception to this is new patients. There is some very old evidence from cluster outbreaks that rest is the most important indicator of recovery in new patients. It is less clear this leads to recovery in long term patients, but is still useful for symptom management.

One problem pacing faces is a lack of multiple arm randomized clinical trials, which would of course be unblinded. If we didn't need proper clinical trials we could be using Ampligen or Rituximab or even Cyclophosphamide right now.

Let me point out that if ME is indeed a hypometabolic state then resting before the signals get locked might be a very very good thing. Its also likely that rest will be of major benefit for patients on effective treatment plants in the future, even things like Rituximab.

 

[alex3619]

Very true but that is the long, drawn out battle that we face. The important thing is that this MP thought it was important enough to write the letter, not the reply that we will get at the moment.

It is a very important indicator, when taken with other things including parliamentary questions in Australia etc., that the public dialogue on ME is changing. For three decades the biopsychosocial story has been long on rhetoric, shown weak science at best, and been very short on substantive evidence. Yet they dominated the conversations about ME for medical professionals, bureaucrats, and politicians. That is changing.

Science should not be dominated by evidence-light rhetoric. Medicine should not be swayed by non-science and pseudoscience.

 

[Jo Best]

From Invest in ME Conference News - http://investinme.eu/IIMEC12-news-170105.shtml

Australian patients have suffered in a similar way to those in UK with with apathetic or misguided policies towards ME and a lack of adequate funding to research this disease.

Last year Senator Scott Ludlam took up the cause and addressed the Senate Estimates committee in the Australian Parliament – and mentioned the work of NCNED during his session

More details here https://www.facebook.com/SenatorLudlam/videos/vb.17351204469/10153980238139470/?type=2&theater

Senator Ludham visited NCNED on 12th February 2016 to see for himself the work that NCNED was carrying out. He was sufficiently impressed to continue his investigations in time for the next session of Senate Estimates.

We look forward to hearing more news of the work at NCNED and hopefully important developments in Australia