Bad news to the MEA from NICE: no review considered necessary

[Daisymay]

I could see it going

• no review
• postpone for another 2 years
• this won't be long enough for another stage 3 trial (I'm assuming?)
• so assuming that the Lancet can continue ignoring calls for retraction of PACE
• postpone for another 2 years

This should allow the senior BPSers to reposition themselves and/or to retire with full pensions while the junior acolytes will be left to duck and dive as best they can on their own.

Given what we now know about CBT and GET and PACE, as a patient I'd personally (and this is my independent opinion) prefer to see patient charities clearly marking each centre as being 'CBT/GET based' or not including them at all. The information at your 'Specialist Services' page does include the disclaimer you have posted in your comment, but not every description attached to each clinic is clear about the types of services they offer. Bath for example is very careful (it would seem) not to mention CBT or GET. I appreciate that a comprehensive overview could be useful but I also think that (as I said earlier) the sorts of patients drawn to using this page will be those who have been recently diagnosed and it would be an extra burden for them to try to assess the calibre of these clinics without specific guidance. You imply you very much wish to give 'clear health warning(s)', so would it not be an idea to use an asterisk system at each clinic entry at the very least so that newcomers are provided with the most comprehensive information? This is now wandering slightly off topic I agree.

Personally I don't understand why all ME patients charities all round the world aren't giving absolutely zero tolerance to the use of CBT/GET because the scientific evidence proves ME is organic not behavioural and that exercise beyond each individuals capacity is potentially harmful and that there is no evidence that CBT/GET works for properly defined PWME.

Hope that makes sense brain rubbish......

Edit To do otherwise is to a degree enabling the BPS brigade to continue to promote these treatments to the detriment of PWME

 

[Valentijn]

A change of tack may be needed.
This is deliberate and wilful, not a failure of understanding, not at this point.
We need the whole media, the whole population, on our side, otherwise nothing will budge.

I agree. NICE is acting as a political body, at least in the case of ME, and not a scientific one. They are ignoring extremely basic scientific principles, like "the disease criteria used are really fucking important" and "unblinded trials with no objective outcomes are really fucking useless."

A patient revolt is the only way to address this, apparently. They simply do not care about the science, and they do not care if their indifference kills us.

 

[NelliePledge]

I would suggest that their (NICE) system is not geared to doing what is best for patients as it states that
"Local or regional groups representing people who work in, or use health and social care services can register as stakeholders only when there is no national organisation that represents the group's specific interests"

which would suggest that smaller representative groups would not be able to register as there are national organisations (eg MEA AfME) ?

if local patient groups are excluded local NHS trusts and CCGs should be excluded as they are covered by national organisation

 

[Barry53]

I found this to be an interesting one:-

False Allegations Support Organisation

 

[TreePerson]

Personally I don't understand why all ME patients charities all round the world aren't giving absolutely zero tolerance to the use of CBT/GET because the scientific evidence proves ME is organic not behavioural and that exercise beyond each individuals capacity is potentially harmful and that there is no evidence that CBT/GET works for properly defined PWME.

Hope that makes sense brain rubbish......

Edit To do otherwise is to a degree enabling the BPS brigade to continue to promote these treatments to the detriment of PWME

Completely agree. I think it would have a big impact if this were to happen. I think it needs to happen.

 

[Research 1st]

Guys this is a matter of democracy and this decision needs to be challenged not accepted.

We cannot, fundamentally have secrecy over WHO denied a change in the NICE guidelines (due to significant advances in biomedical CFS research) unless we agree to live under a dictatorship. Do you agree? I don't.

It's best to be brave, send NICE a polite letter of inquiry but with the understanding you'll be taking legal action if they don't release WHO the review board is.

Naturally it would be against GMC code of conduct for medical doctors with BIAS (e.g. psychiatrists) to be denying an update on the Science, if this Science goes against their own bigoted opinion that ME doesn't exist, and ME is CFS and CFS is a functional somatic syndrome best treated with CBT/GET. We know this viewpoint is prehistoric and dangerous to the patient community and indeed their stressed out carers, many whom have to leave employment to care 24/7 for this sick children and partners.

So we need clarification on what's happening and we need to have confidence in not taking no for an answer.

Bottom line: UK CFS/ME patients cannot donate blood, many are crippled and some even die.
On this basis it becomes a breach of human rights to deny access to the name of individuals who PREVENT SCIENCE from helping disabled people from getting better health care. E.g. a block on reviewing updated medical knowledge is a breach of human rights as it leads to harm.

With NAMES we can take legal action against the people who harm us. Either NICE provide us with names or we take civil court action against the people who made these decisions individually.

This discrimination against the CFS ME community is no different to if we lived in a racist society and a certain race in power decided ethnic minorities cannot go to University because they are deemed intellectually inferior, and when you request WHO made this decision (as an ethnic minority) you are told you aren't allowed to know and the decision is final. This Orwellian approach to state based patient harm is no longer acceptable in an alleged democracy, as ethnic minorities now have full rights in the UK. Thus, it's time the disabled have full rights too, mentally ill or not. (Every law abiding human has the right to be treated with dignity and respect, and NICE are not above the law) and doctors must act in the best interests of patients to maintain their privilege to practice medicine.
.

 

[SamanthaJ]

In the past I've seen a few comments about White advising against tilt table testing when they wrote the guidelines, although I haven't read the source myself. Surely there must be quite a few papers on autonomic dysfunction since then, including UK ones by Julia Newton? If doctors had to look at OI and POTS they'd see ME differently, which is obviously why White would wish to avoid that. More importantly, treatment that many currently don't have access to, unless they know to ask for it, could improve people's quality of life. I have no ideas on how to get NICE to consider this, but it's certainly another element they ought to change. The evidence was there last time but was seemingly ignored, and it's certainly there to change it now.

 

[Spindrome]

Is it worth asking David Tuller to write an open letter to NICE with signatures from the same experts/organisations as his other open letters?

 

[dangermouse]

Is it worth asking David Tuller to write an open letter to NICE with signatures from the same experts/organisations as his other open letters?

I'd say YES.

 

[charles shepherd]

In the past I've seen a few comments about White advising against tilt table testing when they wrote the guidelines, although I haven't read the source myself. Surely there must be quite a few papers on autonomic dysfunction since then, including UK ones by Julia Newton? If doctors had to look at OI and POTS they'd see ME differently, which is obviously why White would wish to avoid that. More importantly, treatment that many currently don't have access to, unless they know to ask for it, could improve people's quality of life. I have no ideas on how to get NICE to consider this, but it's certainly another element they ought to change. The evidence was there last time but was seemingly ignored, and it's certainly there to change it now.

The failure to include any meaningful information on symptoms relating to autonomic nervous system dysfunction in the 2007 guideline is a serious omission and is something that we have been banging on about in our communications with NICE over the years

This is from our submission opposing the decision to place the guideline on the NICE static list:

Symptoms (Page 7, Box 1)

Having produced a new and inappropriate clinical definition for the diagnosis of ME/CFS in the guideline, and one that extends the heterogeneity even further, the symptom list has serious omissions, especially in relation to characteristic symptoms associated with autonomic dysfunction – eg orthostatic intolerance and/or hypotension and postural orthostatic tachycardia syndrome (POTS).

More here:

http://www.meassociation.org.uk/201...nice-mecfs-guideline-on-hold-23-october-2013/

And if my memory is correct from talking to Professor Peter Rowe in the US about this, I think I am right in saying that Peter has also written to NICE about this omission

CS

 

[charles shepherd]

Is it worth asking David Tuller to write an open letter to NICE with signatures from the same experts/organisations as his other open letters?

I have been in communication with David - he is aware of what is happening with NICE

As I mentioned in the MEA statement, reps from all the main UK ME/CFS charities will be at a meeting with the Countess of Mar next week - when we will have a better idea as to what stakeholders are being asked to do during this consultation process

There are a number of options to consider…..

CS

 

[tinacarroll27]

It's best to be brave, send NICE a polite letter of inquiry but with the understanding you'll be taking legal action if they don't release WHO the review board is.

I think you are right! I still think they will try to fob us off but we have to try. After that we need to think of taking this to the courts, as this is a public health matter. They are forcing dangerous treatment onto patients based on poor quality research and the least they should do is remove GET; if this was a drug there would be public outcry!! I am not an expert on any of this and have no knowledge of legal matters but it may be our only choice, as they are obviously not going to change, we may have to make them!!! The PACE Trial authors didn't want to release the data from the trail but we had to force them and in the end and we won!! I think we have been too passive in the past and excepted all this crap but I don't know about anyone else but I am getting fed up of this and it's time we let them know we will not lay down and except this any more!!

 

[dangermouse]

we will not lay down and except this any more!!

I know there are many who have had this awful illness longer than I have, but after my 11 years of trying to exist with ME I am more than ready for some changes.

I'm tired of the stigma. Sick of the horrible attitude of health care professionals. Not happy to be in limbo, this limbo would be, at least, eased if the BPS influence on our NHS and NICE ceased. I wish they'd just leave us alone.

It's bad enough having this illness without their continued input which causes further suffering.

 

[slysaint]

There are a number of options to consider….

Are NICE aware of what is happening in Ireland? see @BurnA thread:
http://forums.phoenixrising.me/inde...ister-for-health-simon-harris-td.47865/page-2

"
I didn't mention it before, but along with my meeting with the Minister, I also met with another TD in my constinuency. We agreed to write a letter to the minister calling for CBT and GET to be removed from the HSE website. I was basically following a two pronged approach because I knew meetings with the minister are hard to get and I don't like waiting!
Today we got a reply which sated :

'The HSE has temporarily removed the content relating to ME/Chronic Fatigue Syndrome from the "Health A to Z" on HSE.ie. The content will be reviewed by the appropriate health professionals and re-published once that review is complete.'

and in Northern Ireland following the OMF visit:

"I have a very exciting breakthrough to share with you as a result of our tour of hope and visit to Northern Ireland. Dr. Ian Clements, Chairperson of the Health and Social Care Board has confirmed that ALL 365 General Practitioner (GP) practices in Northern Ireland will receive new updated information on ME/CFS and fibromyalgia, including biomedical research, that confirms the very physical nature of these diseases. They expect this information to be distributed within a maximum of 8 weeks after further negotiations with the commissioners and Public Health Agency. This news comes from our friends and supporters from the Hope 4 ME & FM Support group and Mr. Iain DeBoys, Commissioner for ME and Fibromyalgia (a committee of Health and Social Care Board)."

We already know that in the US the Agency for Healthcare Quality and Research reassessed the literature and significantly downgraded the evidence for CBT and GET.

And if NICE don't see sense on ethical grounds then maybe the fact that it would save the NHS a lot of money being wasted on ineffective(for real ME patients) treatments. We're not asking for huge amounts of money to be spent on expensive treatments; on the contrary. Better informed GPs who could offer safe and helpful advice on management of the condition would be far more beneficial to all, and improving diagnosis by adopting the Canadian criteria for ME and introducing additional tests (eg for OI, POTS) as standard.
Stop wasting further money by repeatedly funding trials into CBT and GET in whichever shape or form.

I could go on but it has all been said before but presumably not to the right people, by the right people.

 

[dangermouse]

@slysaint that makes such good sense.

 

[SamanthaJ]

The failure to include any meaningful information on symptoms relating to autonomic nervous system dysfunction in the 2007 guideline is a serious omission and is something that we have been banging on about in our communications with NICE over the years

This is from our submission opposing the decision to place the guideline on the NICE static list:

Symptoms (Page 7, Box 1)

Having produced a new and inappropriate clinical definition for the diagnosis of ME/CFS in the guideline, and one that extends the heterogeneity even further, the symptom list has serious omissions, especially in relation to characteristic symptoms associated with autonomic dysfunction – eg orthostatic intolerance and/or hypotension and postural orthostatic tachycardia syndrome (POTS).

More here:

http://www.meassociation.org.uk/201...nice-mecfs-guideline-on-hold-23-october-2013/

And if my memory is correct from talking to Professor Peter Rowe in the US about this, I think I am right in saying that Peter has also written to NICE about this omission

CS

Thank you for the info. Just looked at that MEA list of recommendations to NICE from 2013. There clearly has been plenty of evidence for NICE to consider for a thorough guideline review, and many things that could be made so much better, at relatively little cost. What will it take for NICE to recognise that the 'experts' are not the experts?

 

[Jenny TipsforME]

this decision needs to be challenged not accepted.

Remember they (supposedly) haven't made a firm decision yet. It is up to the stakeholders to persuade them. This is the process.

The failure to include any meaningful information on symptoms relating to autonomic nervous system dysfunction in the 2007 guideline is a serious omission

Yes. I went for years without useful treatment because of this omission ☹️
Information about POTS and OI would definitely be good additions. Ideally routine testing at first diagnosis.

 

[arewenearlythereyet]

we may need some spiritual guidence so we dont curse the ones on the panels making stupid decisions.

Hell yeah!

 

[Sean]

Stop wasting further money by repeatedly funding trials into CBT and GET in whichever shape or form.

Indeed. There is already plenty of evidence on the value of CBT/GET and the broader BPS model for ME, much of it from studies by the BPS school itself, and that evidence speaks clearly: It doesn't work.

Not another penny for this madness.

 

[lilpink]

All of these NHS services offer CBT and GET (although the latter is often closer to pacing than rigid GET) - so I don't think there is much point in tagging each service that provides CBT and GET

I've been discussing this issue with interested parties behind the scenes. One sensible suggestion was that the MEA, being a patient charity, might like to harness the experiences of patients and introduce a review facility much like NHS Choices in England. Thus people who have attended the clinics can provide a short written appraisal of that experience and also a star rating (usually one to fives stars is applicable) . Not only would this provide a very real and interactive overview of how patients feel the clinics have served them but it would also provide the MEA with an added database in terms of overall patient satisfaction of the clinics available. I can't imagine it would take much website expertise to set that up and it would be an invaluable resource especially for newcomers who can't be expected to get up to speed on all the shenanigans of ME politics.