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

Countrygirl

Countrygirl

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http://www.meassociation.org.uk/201...ne-review-and-its-not-good-news-05-july-2017/

The ME Association has heard back from NICE about the guideline review… and the news is not good.

Buried in the letter to stakeholders that was sent out in December 2016 was a rather worrying statement:

“There will be a 2-week consultation with registered stakeholders if information summarised indicates that a ‘no update’ decision should be considered.”

“There is no consultation if the decision is to update the guideline because it has been based on the availability of new evidence, and is usually supported by stakeholders.”

We wrote to NICE to ask them for clarification as to whether the triggering of a stakeholder consultation, that will commence on 10th July, basically means that the group who have been reviewing the evidence have decided that a formal and full review of the NICE guideline on ME/CFS is not now required.

This position has been confirmed by NICE this morning.

The exchange of correspondence between the ME Association and NICE is set out below.

This is obviously going to come as very disappointing news to the ME/CFS patient community and we will now be doing all we can to try and persuade NICE to overrule the ‘no update’ necessary advice they are being given.

This means that NICE needs to take serious note of:

1. the extensive and consistent patient evidence on the ineffectiveness of CBT and the harmful effects of GET

2. the criticism of the PACE trial that has come from both the ME patient community and from clinicians and researchers

3. the re-analysis of the PACE trial data on recovery

4. the evidence that the MEA has already submitted when NICE was placing the ME/CFS guideline onto their ‘static list’. This evidence covers a number other important areas of the NICE guideline where we believe that the guideline is not fit for purpose and needs to be properly revised

We will also be meeting with other ME/CFS charities and the Countess of Mar for a Forward ME Group meeting at the House of Lords next week where the NICE guideline review will be on the agenda

Dr Charles Shepherd
Hon Medical Adviser, ME Association
 
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charles shepherd

Senior Member
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2,239
NICE Guideline Review: The 'experts' are recommending a 'no update' (July 5th 2017)

Exchange of correspondence between The MEA and NICE indicates that the expert group reviewing all the evidence have concluded that there is no need to review the NICE guideline on ME/CFS

Exchange of correspondence here:

http://www.meassociation.org.uk/201...ne-review-and-its-not-good-news-05-july-2017/

Dr Charles Shepherd
Hon Medical Adviser, MEA
 
Countrygirl

Countrygirl

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Meanwhile, back in the House, Lady Mar is fighting our corner:
https://www.theyworkforyou.com/lord....2&s=(chronic+fatigue)+2017-06-21..2017-07-05

The Countess of Mar Deputy Chairman of Committees, Deputy Speaker (Lords) 2:37 pm, 4th July 2017
To ask Her Majesty’s Government who is responsible for ensuring the implementation by Clinical Commissioning Groups and hospital providers of the Guidance for commissioners of services for people with medically unexplained symptoms, published by the Joint Commissioning Panel for Mental Health.

Lord O'ShaughnessyThe Parliamentary Under-Secretary of State for Health[/paste:font]
My Lords, the Joint Commissioning Panel for Mental Health is not a government body and implementation of the guidance that it published is not mandatory. Regarding the classification of chronic fatigue syndrome and myalgic encephalomyelitis, or CFS/ME, the Government accept the World Health Organization’s classification of the illness as a neurological condition of unknown origin.

The Countess of MarDeputy Chairman of Committees, Deputy Speaker (Lords)[/paste:font]
My Lords, I am grateful to the Minister, although I am disappointed that we cannot pin anyone’s foot to the floor on this. There is no definition of medically unexplained illnesses in the paper mentioned in my Question, but in interpreting it, hospitals and other providers have somehow made CFS/ME a medically unexplained symptom and have recommended graded exercise and cognitive behavioural therapy as treatments. Graded exercise in many cases is known to make people sicker and to damage them, the scientific reasons for which are also known. Cognitive behavioural therapy has been shown to work for only about six months. The PACE trial which recommended cognitive behavioural therapy and graded exercise is now discredited, and NICE is reviewing its guidelines on it. Who is responsible for worsening the condition of patients who are advised or coerced into taking cognitive behavioural therapy and graded exercise?

Lord O'ShaughnessyThe Parliamentary Under-Secretary of State for Health[/paste:font]
I congratulate the noble Countess on the important work that she does through Forward-ME on behalf of the illness’s sufferers. On who takes responsibility for the care of those suffering from CFS/ME, it is of course clinicians. They work to evidence of best practice, which is guided by NICE. She alluded to the fact that the NICE guidelines are being reviewed to make sure that we have the best possible understanding of what is effective in the treatment of the illness, but I reiterate to her the point that the Government’s acceptance of the WHO classification of it as a neurological disease has not changed.

Lord Hunt of Kings HeathShadow Spokesperson (Health), Shadow Deputy Leader of the House of Lords[/paste:font]
My Lords, the approach taken by the NHS and child protection services to CFS/ME and other unexplained symptoms has had a sorry history. Some clinical commissioning groups state with great authority that graded exercise and CBT are the appropriate response. The point made by the noble Countess is that in many cases they are not, and can cause damage. Unfortunately, where children are involved, patients who resist such therapies often find themselves in problems with child protection agencies—there was an excellent programme about this on Radio 4 over the weekend. Prior to the NICE guidance coming out, will the Minister look with his officials at whether CCGs might be given some rather more authoritative advice, because it is clear that some CCGs have got this wrong?

Lord O'ShaughnessyThe Parliamentary Under-Secretary of State for Health[/paste:font]
I am certainly happy to investigate CCG practice and commit to write to the joint panel to make sure it understands both the nature of the classification of the illness and the fact of the NICE guidelines. Of course, those are guideless for clinicians; they are not mandatory in themselves.

Baroness Jolly Liberal Democrat Lords Spokesperson (Defence)[/paste:font]
My Lords, the commissioning of mental health services has a chequered past at best, particularly when involving many agencies such as in this case. However, good commissioning practice exists. What training is available for commissioners of such complex services and what opportunities are there for sharing innovative practice?

Lord O'ShaughnessyThe Parliamentary Under-Secretary of State for Health[/paste:font]
Of course, a suite of training is available for those treating illnesses such as this one, which affects about 220,000 people in England. It is not a rare disease; unfortunately, it is far too common. That treatment is there and also a number of networks exist, such as the Academic Health Science Networks, to spread innovation and best practice for treatments around the NHS.

The Bishop of St Albans Bishop[/paste:font]
My Lords, many of us are glad to have this report published by the Joint Commissioning Panel for Mental Health on services for people with medically unexplained symptoms. There is a welcome stress in it on trying to get integrated care—a both physical and mental approach. Would the Minister comment on the need to have an integrated approach to the spiritual dimension of this as an essential aspect of addressing these medically unexplained symptoms?

Lord O'ShaughnessyThe Parliamentary Under-Secretary of State for Health[/paste:font]
Of course, the difficulty for sufferers of these illnesses is precisely the unknown origins of them. There are obviously physical aspects—that is the whole point of this being a neurological condition—as well as mental health aspects in terms of dealing with it. No doubt, spiritual guidance and uplift can help those dealing with these awful conditions.
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Esther12

Esther12

Senior Member
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Sounds like we're going to have to re-explain to them the problems of making treatment recommendations based on nonblinded trials and self-report outcomes. This can mislad doctors and patients as well as promoting patient, and it's time for NICE to recognise this.
 
A.B.

A.B.

Senior Member
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3,780
They clearly don't understand the situation. As far as I know, all of the evidence on CBT/GET, except one study, is based on unblinded trials with primary subjective outcomes that cannot tell you whether positive results are genuine or merely due to bias. The results are generally consistent with the null hypothesis: modest temporary improvements on some or most subjective outcomes, no clinically significant change in steps per day, employment, etc. That's the kind of results you would expect if the treatment was ineffective.

So what we have here is a mass of papers that are completely unsuitable to serve as basis for public health guidelines. Quantity cannot compensate for the aforementioned design flaw. There is no basis to conclude that CBT/GET are useful treatments for CFS.

There is one double blinded placebo controlled study that included CBT and it concluded:
Neither dialyzable leukocyte extract nor CBT (alone or in combination) provided greater benefit than the nonspecific treatment regimens.
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https://www.ncbi.nlm.nih.gov/pubmed/8430715
 
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dangermouse

dangermouse

Senior Member
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I am concerned that we'll be stuck with inappropriate NICE guidelines for ME till the actual cause and proper (real) treatment is discovered.

Till then our GP's and other health care professionals will be offering CBT and GET.

Unbelievable, but at the same time it's not a surprise is it.
 
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charles shepherd

Senior Member
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AndyPR said:
@charles shepherd , if the consultation period doesn't change the "expert" groups mind, do you have any idea how long we might have to wait until they could be convinced to look at it again?
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How long is a piece of string?

I think they will only go through the process again when there is some really solid published evidence from a clinical trial on something other than CBT and GET to seriously consider

Eg: Two independent phase 3 clinical trials confirming that rituximab is a safe and effective form of treatment for at least a sub-group of people with ME/CFS

CS
 
Large Donner

Large Donner

Senior Member
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866
It all seems rather confusing, has it already been decided that no review of the NICE guidelines will happen or not and what is due to happen on the 10th July?

Are they saying that they are only having the consultation due to in already being decided that if there was a review necessary the stakeholders would all have agreed such and therefore the consultation is an appeal process of sorts to overturn the decision not to review ?
 
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Large Donner

Large Donner

Senior Member
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866
arewenearlythereyet said:
Spiritual guidance .....sigh
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Yes not only that but its also doled out by the state as a claimed treatment. It reminds me of when head teachers assure parents in schools that the state rolled out mindfulness they are making children practice from the age of five is non a denominational secular practice.

They really need to look up the definition of religion and faith based unsupported beliefs, its got nothing to do with who you are choosing to pray to or not using your own choice.

Once the state takes on CBT or mindfulness or "spiritual guidance" onto the statute to push onto its citizens as proclaimed treatments or prevention from future "mental illness" or wrong ways of thinking, things have gone seriously wrong. Its just religion without a God.

I'm trying to work out if that's fascism or communism, who knows nowadays.
 
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