NICE announces next steps in updating its guideline on ME/CFS

Dates of stuff happening:
NICE has also confirmed the next steps in the development of the new guideline, starting with a further workshop with stakeholder organisations on 25 May to discuss the scope of the guideline. Stakeholders will then have the opportunity to comment on the draft scope between 21 June and 19 July. This will coincide with recruitment to the independent guideline committee, which will also begin on 21 June with adverts posted on the NICE website.
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This sounds good:
“The clear message from the workshop was the need to ensure the new guideline properly addresses and resolves the continuing debate about the best approach to treating people with this condition. It also confirmed our intention to ensure robust representation of people with ME/CFS, or their carers, on the independent committee that will develop the guideline.

“Therefore, following the scoping workshop we’re holding in May, we will recruit a guideline committee which will include 4 people with the condition or their carers, rather than the usual 2. Additionally, we will include a lay member on the recruitment panel for the chair of the guideline committee.”

Once recruited, the committee will review a wide range of evidence and develop recommendations, based on the agreed scope of the guideline.
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Learn what the fucking disease is, NICE. Even their own crappy criteria are better than this description:
ME/CFS is a relatively common condition affecting around 190,000 people in the UK. It comprises a range of symptoms that includes fatigue, headaches, sleep disturbances, difficulty concentrating and muscle pain.
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Would have been nice (haha, see what I did there??) for them to send these details out to the stakeholders directly.... :grumpy:

ETA: Just sent an email asking when we will be informed officially.
 
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Lilpink said:
I must say I tend to side with Invest's assessment... this will turn out to be a cynical exercise. They might move an inch but they won't ever give us the mile...
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If you all mobilized like it happend in USA and they knew we would not take garbage and said we would ask for review if they came up w garbage, you might be surprise. You just have to show you are strong as a unit ( ME) and watch and make very public and noisy complains, then you will get what you need.
We sometimes understaimate the ME numbers, millions of plp do have power specially when loose on tweeter, Facebook and making noise and live difficult for them.
 
I am no genius but if they use ICC or IOM criteria and have PEM as mandatory, that will ensure ME patients are researched and not mixed in with other fatiguing illnesses. I feel numbers with ME are grossly exaggerated. The psych brigade can still play around with other variants of fatiguing illnesses and those in that category can fight their own battle. So the psych brigade are not losing out totally.
 
Sunshine3 said:
The psych brigade can still play around with other variants of fatiguing illnesses and those in that category can fight their own battle. So the psych brigade are not losing out totally.
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I would not wish the psychs involved in the whole BPS nonsense to be inflicted on any group, whatever the source of their fatiguing illness.

The PACE trial was basically a fatigue trial, since it used the Oxford criteria whose only requirement is at least 6 months unexplained fatigue. The re-analysis of the data and the long term follow up on these patients showed the GET and CBT treatments didn't work.

So we know that, whether fatiguing illness is caused by depression, unknown physical causes, or ME/CFS, nobody should have these treatments. They don't work for any of us.

I'd be delighted if the psych brigade lost out totally on treating or researching fatiguing conditions of any description. They are not owed anything after the mess they have made and the harm they have done.
 
Seven said:
If you all mobilized like it happend in USA and they knew we would not take garbage and said we would ask for review if they came up w garbage, you might be surprise. You just have to show you are strong as a unit ( ME) and watch and make very public and noisy complains, then you will get what you need.
We sometimes understaimate the ME numbers, millions of plp do have power specially when loose on tweeter, Facebook and making noise and live difficult for them.
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I don't know if it is the same in the USA but last time we had a Judicial Review into the NICE guideline. Was at the court and great support from patients inside and out. Didn't work though.

http://www.meassociation.org.uk/2009/03/nice-statement-on-the-outcome-of-the-judicial-review/
 
Trish said:
I would not wish the psychs involved in the whole BPS nonsense to be inflicted on any group, whatever the source of their fatiguing illness.

The PACE trial was basically a fatigue trial, since it used the Oxford criteria whose only requirement is at least 6 months unexplained fatigue. The re-analysis of the data and the long term follow up on these patients showed the GET and CBT treatments didn't work.

So we know that, whether fatiguing illness is caused by depression, unknown physical causes, or ME/CFS, nobody should have these treatments. They don't work for any of us.

I'd be delighted if the psych brigade lost out totally on treating or researching fatiguing conditions of any description. They are not owed anything after the mess they have made and the harm they have done.
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I am not saying they are owed anything, the fact is they can totally disable patients with ME with GET. We need to be separated from other fatiguing illnesses asap as lives are at stake, especially those of children. We are fighting a battle for ME patients, not every fatiguing illness under the sun.
 
Luther Blissett said:
Has anything been mentioned about expenses being paid to those who will give their personal expertise as non-professionals or lay members?

Nothing mentioned on the NICE join a committee page.
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They pay your expenses to come to meetings if you are accepted on to the committee. I do know of lay members getting other incidental expenses paid as well.
 
With any movement in criteria there must be awareness of the MUS diagnosis that is a fall back psychologization of any that do not yet meet stricter definitions but could if given inappropriate treatment regimes.
Have no expectations that NICE will give anything more than political pressure dictates must happen.
 
Sunshine3 said:
I am not saying they are owed anything, the fact is they can totally disable patients with ME with GET. We need to be separated from other fatiguing illnesses asap as lives are at stake, especially those of children. We are fighting a battle for ME patients, not every fatiguing illness under the sun.
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Thanks for clarifying what you meant, @Sunshine3. I think I misunderstood your point. Sorry.
 
Luther Blissett said:
Has anything been mentioned about expenses being paid to those who will give their personal expertise as non-professionals or lay members?

Nothing mentioned on the NICE join a committee page.
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I have just finished filling in the Online system for my expenses.... I guess it might be easier second time around (if that happens), but it's a bit of a faff to say the least.
 
Reviewing a wide range of evidence is pointless until they understand and accept that ME is a physical illness as per the IOM report. It cannot by treated with psych treatments which were designed to treat false illness beliefs.

What is the point in reviewing all the crap studies done by Sharpe, Chalder, Crawley et al, they are all biased and use subjective outcomes and will obviously all say cbt get works for ME when most of the patients in the study probably didn't even have ME.

There are virtually no trials of any other treatments, so if treatment trials are all they will look at, it's pointless and there seems no way we can win this.
 
I received no alert about this which is unacceptable! I registered as a Stakeholder then was told by NICE HR that I was not permitted as a local/ regional group!

I guess it will be worth muscling in on the May Scoping just to give them a hard time…..

NICE is all about the noise, not any substance- it’s part of the machinery of the State- designed to limit service and save money.

NICE will be given no autonomy or flexibility to “ do the right thing.’ They are cogs in a never ending wheel of democratic reduction for the ordinary citizen.......

I still have not cracked the expenses claim online nonsense software...
 
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An addendum- most of the statements in the bubbles I took from NICE's own literature on their website. (Say it and it is/will be done)- ....or not as the case may be...! I did it in preparation for the Engagement meeting.
 
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No guesses for what I am talking about here!
( I also posted this on thread about closure of East London Service)

Oh how the mighty have fallen-

"Barts and services linked to it such as an in Essex..." I learnt that funding was cut by the CCGs by 50% last year, when I was researching for our local dilemmas in Suffolk & Norfolk.

In my view, the closure of services has nothing to do with NICE -(who I suggested might be/were a toothless giant in January) -NICE has become irrelevant or an excuse to marginalise patient- NICE is a very useful distraction to keep us occupied.
NICE is largely ignored or cherry picked- it is no longer the powerbase in the department of Health..NHS England is the new kid on the block.

it's about the privitisation of the NHS and the transfer of power and resource to CCGs and GPs.......

The creation of the CCGs allowed for abdication of all that had been worked towards or achieved (both good & bad) since 2004 or 2004-all commitments and pledges made under PCT steer no longer have to be honored, in my experience.

Some of the existing ME and CFS services have been consigned to Community Interest Companies - (on the behest of the Department of Communities and Local Government Social Enterprise Companies) - who only answer to Companies House where they are economical with the true about services, embroider facts or distorted in their annual returns- they are totally unaccountable...... The Executive's salaries are generous, just as so with the PCTS.

They are Landsleys Legacy- and I have become totally disillusioned by it all after 20 years of fighting the system. At least Labour tried with the Long term Conditions Framework. That should some commitment.

At the end of the day it's all about politics, power and patients are a nuisance, especially ME and CFS patients and carers. Is it any wonder why we are seeing a dwindling of the specialists doctors we so desperately need?

With CCGs we will see a total annihilation of most services.

We will just have to learn to fend for ourselves as best we can.
And I didn't even consider the "B" word!..... and I don't mean Boris...
 
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