Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

[Dechi]

Done

 

[charles shepherd]

@charles shepherd
I think you should read this thread on coverage of the BACME (also members of the CMRC) conference from last year; I would imagine that some of those who participated are the 'experts' referred to by NICE.

But it also shows very clearly the bias of these 'experts' in favour of their own beliefs.
http://forums.phoenixrising.me/index.php?threads/report-on-2016-bacme-conference.48885/

the write up discussed is https://www.cot.co.uk/sites/default/files/regional-groups/public/BACME-conference-2016.docx.

(NB: I believe the Hans Koop referred to is Hans Knoop whose research papers, 8 of them, are used in the NICE surveillance proposal).

We are still waiting for a meaningful response from NICE on membership of the 'expert' group that has carried out the review of existing evidence and concluded that 'no update' of the 2007 guideline is required

This request is also the subject of a Freedom of Information request

CS

 

[Countrygirl]

11 500

 

[slysaint]

11 500

As the deadline has been extended can you remove the line on your first post that says it's only for a week, or change something in the title?

 

[Countrygirl]

As the deadline has been extended can you remove the line on your first post that says it's only for a week, or change something in the title?

That is a good idea @slysaint .

However, I have tried but the title tool thingy has disappeared. It will need a mod to change it, I think.

@Sushi @Kina Please could you add the extended date Friday 21st July to the title please? Thanks!

 

[arewenearlythereyet]

@charles shepherd is anyone at the MEA able to compile a summary of the comments left in the petition ? I think it would add weight to the overall message across if there is time and resource. I was thinking along the lines of "42% specifically mentioned GET" and " of these there were 1500 individual comments stating they had got worse as a result of the treatment". I just made those up...but you get the sort of thing.

Attributing numbers to comments, although anecdotal could add a lot of weight to the message.

Apologies if you have already thought of this/ have actioned. Just thought I would suggest it.

 

[Countrygirl]

While we wait for the MEA's petition to top 15 000, here is an article written about his views of the petition by Greg Crowhurst and why he won't sign it . As many of you know, Greg has loyally nursed his very severe ill Linda for many years and has also written a book on caring for the severely ill.

This is the thought-provoking article which he wrote yesterday.

(In my opinion, we have to pick our battles and fight them at the appropriate time, and it is necessary to be prepared to lose a few in order to win the war....eventually. )

BE VERY CAREFUL WHAT YOU ASK FOR

I try not to let the shambolic mess that passes for “ME” advocacy these days get to me too much; through each, long heart-breaking moment of her agony and paralysis, my focus has to firmly be with Linda.

Our days are brutal; here on the extreme edge, what you search for, passionately, is truth.

Anything else just gets in the way, is potentially fatal.

So, it is gutting knowing that 10 000 people have signed an MEA petition for “CFS/ME”, never did I think I would see the day the so-called ME community would cave in and use that most damaging, most insidiously evil, most wicked of labels.

We haven’t had much to hold onto down the years , but at least we used to insist upon the correct use of Myalgic Encephalomyelitis, by God, with no mention of “CFS”.

“ME/CFS” was bad enough, but it was physically repulsive to use the language of psychiatry that has caused so many deaths. For as people with ME should know by now, CFS/ME is not a single disease, it is a Chronic fatigue- focussed, psychiatric made-up, conglomerate term, that mixes people with all sorts of different illness, including mental health conditions, together, thus serving no one and leading to confusion.

Ah, but then it was the MEA who gave us “Opathy” after all! While the rest of us were busy arguing for the separation of ME from CFS.

Did I say our situation is dire? What I am particularly shocked and rage at is that 10 000 people have signed a petition questioning why NICE’s policy on Severe ME has not been implemented fully ?!!! Really? An “individually tailored graded activity programme” which may draw upon “elements of CBT and GET”. This is the very last thing people with Severe Myalgic Encephalomyelitis need.

It is great, of course it is, to say that CG53 is not fit for purpose and to get such a wonderful response. However everyone who signed that petition gives the message that they agree with every single point in the Petition.

Do they really?

Where is their discernment?

The Petition raises questions, to us at least.

Do people with ME really want CFS/ME to be called a neurological disease, which will lead to even more confusion, validating all sorts of people with different diseases?

Where is the clarity on what is a neurological disease and what needs separating and letting go of?

The CFS/ME guidelines are not about Myalgic Encephalomyelitis. They are not even about CFS, rather they are about Chronic Fatigue , which needs its own set of appropriate medical guidance.

CG53 need a complete rewrite, starting with a firm biomedical focus on Enterovirus.

Looking at the detail of the Petition, it starts well.

Of course the guidelines are and always were, not fit for purpose.

Of course the Active list is essential.

Of course international research is important, however, the chronic lack of clarity of definition used by different research projects, leaves no one knowing who or what is actually being researched; the relevance of findings, for ME or CFS for that matter remains confusing and unclear.

Asking for International Research to be considered without specifying the term ‘Biomedical’, still leaves the door wide open for psychiatric research.

It worries us that the MEA does not ask for the withdrawal of CBT, only GET. CBT, when used to change wrong illness belief within a psycho-social interpretation of CBT, is just as insidious as GET, for mental exertion is equally as damaging as physical exertion to the genuine ME sufferer.

Of huge concern, to us, is the demand for Pacing for everyone.

Do you REALLY want Pacing for everyone ?

Although many people do pace, do not forget that not every one can.

To insist on Pacing across the board is to harm those barely hanging onto life, the most Severely Affected, for whom pacing is difficult to impossible.

To ask for Pacing across the board is akin to proposing Graded Activity for those Severely affected with ME.

The concept of pacing is a nonsense, when paralysed repeatedly all day and night long.

And here's the thing : asking for pacing for everyone is just another management strategy; it is nothing new!

Do you really still want “Management” ?

People with ME are desperate for medical respect, a removal of psychiatry from first hand input into ME, proper investigation, the tests afforded to other diseases, and a biomedical pathway, none of this is even mentioned specifically in the petition.

We want medical Treatment !!!

Linda, for the record, cannot pace, for there is no base line identifiable, when paralysing repeatedly, not even rest is possible for her, without paralysis; get real about what you are signing up for !

People with Severe ME, living, literally below Maslow, cannot even get on the bottom rung of life, never mind pace.

Pacing does not come to mind, way down here in the tortuous depths of this awful disease, any more than Graded Activity does!

What this petition shows, above all to us, is what a dangerous presumption it is, making emands on behalf of the most Severely Affected. Be careful what you presume to ask for; it can do untold harm unintentionally or be open to misinterpretation or misuse in the future.

Do 10,000 people really want to complain that people with Severe ME have not had the current ‘unfit for purpose’ guidelines, full implemented, with graded activity management as the core recommendation?

When signing petitions, please think about every single word and what it is actually saying; read the detail and think about the effect on everyone, not just you. Ask for it to be rewritten, if you do not fully agree.

We have spoken up for years for ME. The MEA Petition in our opinion is not safely worded enough to protect those with Severe ME.

This Petition, with its failure to demand the removal of CBT, with its recommendation for across the board pacing, with its promotion of Management Strategies, with its uncritical emphasis upon research that may or may not be ME research at all, goes a long way, in our opinion, to ensuring the future of the Fatigue Clinics.

Without a demand for better Clinical Criteria, such as the ICC Criteria which call to separate CFS and ME, without insisting that the Oxford criteria be banned, without specifying biomedical input and above all, with a lack of knowledge of Severe ME, this Petition lacks the clarity required for a safe service.

The NICE Guidelines are absolutely not fit for purpose, but, we have to ask, are all the demands of the MEA petition equally fit for purpose? We do not think so, sadly.

That is why we could not and did not sign it.

Greg & Linda Crowhurst

 

[arewenearlythereyet]

I agree we do need to pick our battles. This petition is about NICE guidelines and only NICE guidelines. It is not about:

Changing how NICE Operate
Setting a specific agenda for medical research
Changing the name or reclassifying the disease

..it's a bit like cutting your nose off to spite your face to not sign unless the MEA gives them the world in a cup. No petition can possibly encompass all of those things and nobody has a magic wand to correct everything all at once.

The phrasing of the name is specifically for the NICE guideline debate? I genuinely have every sympathy for their predicament but something is better than nothing in my book which is why I signed and got 20 of my family to also sign.

They make some critical good points and some other points that are vague, contradictory and intangible. It sounds like they will never be satisfied. A quality I admire, but sometimes, you do need to make compromises to move forward.

 

[Undisclosed]

That is a good idea @slysaint .

However, I have tried but the title tool thingy has disappeared. It will need a mod to change it, I think.

@Sushi @Kina Please could you add the extended date Friday 21st July to the title please? Thanks!

The title is at the maximum # of characters allowed by the software -- to add the extended to date, I will have to remove something.

 

[Countrygirl]

The title is at the maximum # of characters allowed by the software -- to add the extended to date, I will have to remove something.

Hi @Kina .

Thanks!

I suggest the word URGENT can be deleted now. Can we replace it with 'Closing 21st July' at the end of the heading? Will that fit? We still need ALL COUNTRIES I think, but could omit the two THEs if there are still too many letters.

Does that work?

 

[MeSci]

Hi @Kina .

Thanks!

I suggest the word URGENT can be deleted now. Can we replace it with 'Closing 21st July' at the end of the heading? Will that fit? We still need ALL COUNTRIES I think, but could omit the two THEs if there are still too many letters.

Does that work?

It says 'Closing July 2nd' now!

 

[slysaint]

Sorry @Countrygirl not trying to muscle in but just looked and we are now at 12,000

 

[arewenearlythereyet]

It must of been the change of title that did it

 

[Countrygirl]

Sorry @Countrygirl not trying to muscle in but just looked and we are now at 12,000

Wow!

I was caught failing in my duty! (been sidetracked with an email from someone with ME who has been informed by the DWP that they have been told by their 'expert' that she must start to build up her her 'activity' which will cure and get her back to work in 18 months. ! This will enable them to stop her benefit. Cure yourself in 18 months or else! )

Okay @slysaint . You do day duty and I cover the nights. Insomnia has to come in useful at times.

 

[Countrygirl]

It must of been the change of title that did it

Thanks @Kina.

 

[MeSci]

(been sidetracked with an email from someone with ME who has been informed by the DWP that they have been told by their 'expert' that she must start to build up her her 'activity' which will cure and get her back to work in 18 months. ! This will enable them to stop her benefit. Cure yourself in 18 months or else! )

 

[BurnA]

I agree we do need to pick our battles. This petition is about NICE guidelines and only NICE guidelines. It is not about:

Changing how NICE Operate
Setting a specific agenda for medical research
Changing the name or reclassifying the disease

They do have some good points.
The petition does seem poorly worded - there was probably no need to have some much detail in there at all.

For example

• We want NICE to remove Graded Exercise Therapy as the recommended treatment for patients who are moderately affected and to place an appropriate health warning against general use of this therapy in CFS/ME specialist clinics

Why only moderate patients?

And why not CBT too?

(And there was no need to call it CFS/ME.)

Anyway I guess the intent is to provoke discussion, and hopefully a review.
But the demands would need to be carefully worded if a review takes place.

 

[MEMum]

I guess they are most concerned about removing GET, as it has the clearest evidence of harm from patient reports and science.
Anything that tells NICE bosses that they need can't just shelve a comprehensive review indefinitely is key.
Trying to explain that the Psych/PACE CBT model is wrong as it has the premise "You are deconditioned and your unfounded fear of exercise" is keeping you ill, is probably too complex.
Sorry this post is probably confusing, feel free to ignore, too many painkillers.

 

[Countrygirl]

Just received this in my inbox:

The Countess of Mar Deputy Chairman of Committees, Deputy Speaker (Lords)
My Lords, I declare my interest as the chairman of Forward-ME and a patron of the Young ME Sufferers Trust. Many young people with ME are believed to have a mental illness, and despite what the noble Lord said two weeks ago and what other Ministers have said—that ME is not a mental condition—how do we persuade professionals that these children would probably be much better off if they were left to allow their bodies to heal themselves rather than having cognitive behaviour therapy and graded exercise imposed upon them?

And this is her answer
Lord O'ShaughnessyThe Parliamentary Under-Secretary of State for Health
I know that the noble Countess feels passionately about this issue, but she will know that it is only right for me to say that we need to be guided by evidence that is collected in clinical reviews. A review is being carried out by NICE at the moment and we shall wait to see the results of that before deciding what needs to happen as a consequence in terms of the kinds of treatments that are appropriate for those suffering from ME.

 

[Countrygirl]

12 500