UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

[Sean]

Beliefs and attitudes towards illness are important in many physical and mental conditions.
Trudie Chalder

Especially among those who claim to know how to treat them. Their beliefs and attitudes can do great harm.

“Our researchers were involved in the landmark PACE trial, which showed that CBT and GET for CFS were more effective and more cost-effective than adaptive pacing therapy – where people balance rest with activity – or specialist medical treatment. One year, after a course of CBT or GET, a fifth of people had recovered and were able to partake in life without significant fatigue.”

Noted for future legal proceedings.

 

[Dx Revision Watch]

https://apcp.csp.org.uk/news/2021-1...-outlines-steps-better-diagnosis-management-1

APCP (The Association of Paediatric Chartered Physiotherapists)

NICE ME/CFS guideline outlines steps for better diagnosis and management
NICE has published its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS)

05 NOVEMBER 2021

(...)

PUTTING NICE GUIDANCE INTO PRACTICE

APCP is keen to hear from any member who uses NICE guidance to enhance their services for babies, children and young people.

Please contact the APCP NICE Guidelines Officer to share your experiences of putting NICE guidance into practice.

 

[MSEsperanza]

Note: The statement on the Royal College of Physicians site had only listed the Colleges:

Royal College of Physicians
Royal College of Physicians of Edinburgh
Royal College of General Practitioners
Royal College of Psychiatrists
Academy of Medical Royal Colleges
Faculty of Sport and Exercise Medicine
Faculty of Occupational Medicine

So the professional bodies' representatives preferred to hide their names in a paywalled BMJ article.

Anyone else was surprised that the RC of Paediatricians didn't sign the joint statement?

Also, I thought it's interesting that, if I looked properly, of all the signatories the Royal College of Physicians was the only one that put the statement on its website. (I checked all other colleges and faculties websites' news / news and views / statements websites.)

(Still not able to catch up with the thread so apologies for one again just popping in.)

Edit: typo in Paediatr....

 

[DigitalDrifter]

Can someone please contact Brian in the following thread (https://forums.phoenixrising.me/thr...me-cfs-for-3-years.40617/page-15#post-2374419)?

He wants to know what we think of the new NICE guidelines, he is too unwell to read it himself. I feel bad for him, he has been sectioned for years, no body replied to his post.

 

[Hutan]

I've replied to the poster on PR, pasting in a copy of the Science for ME's press release.

 

[Peter T]

An article on the new NICE guidelines and the fallout from the Royal Colleges in the Canary, see https://www.thecanary.co/opinion/2021/11/08/nices-new-me-guidelines-wont-stop-the-whitewash-of-the-disease/?fbclid=IwAR0hEP6S1EMLd1-qQdWFHpIxXOURzMnjntNUmGyuHF25n7okQKFvNr0pBxs

NICE’s new ME guidelines won’t stop the whitewash of the disease

The National Institute for Health and Care Excellence (NICE) has published new guidelines for the treatment of myalgic encephalomyelitis (ME). It comes after delay, controversy, and decades of harm for people living with this debilitating disease. But while the new guidelines have some changes, the flaws in both them and in medical care in the UK, still undermine any good that is to be found in NICE’s new treatment recommendations – leaving them as a whitewash of systemic problems.

 

[Fainbrog]

I've not been firing on all cylinders of late, so haven't been paying too close attention to the RC shenanigans, but it feels like they have gone dark since the toy throwing episode. Would that be a vaguely accurate assessment of things? Doubt we have heard the last of them, but perhaps they have finally started to read the room a bit ( wishful thinking).

Anyone aware of what the UK ME charities are doing now/next with the GL having been published? They too seem to have gone quite quiet.

I've also not seen any more FOI responses from NICE, I am following a number of them on WDTK.

Sorry, feel like I'm playing catch-up a bit.

 

[Dx Revision Watch]

Anyone aware of what the UK ME charities are doing now/next with the GL having been published? They too seem to have gone quite quiet.

MEA has another NICE related poll:

"Dr Shepherd, Honoray [sic] Medical Adviser to the MEA explains why we've asked this question in our November poll on our Facebook here:

https://www.facebook.com/meassociation/posts/4539214056136217

 

[Dx Revision Watch]

 

[adambeyoncelowe]

I've not been firing on all cylinders of late, so haven't been paying too close attention to the RC shenanigans, but it feels like they have gone dark since the toy throwing episode. Would that be a vaguely accurate assessment of things? Doubt we have heard the last of them, but perhaps they have finally started to read the room a bit ( wishful thinking).

Anyone aware of what the UK ME charities are doing now/next with the GL having been published? They too seem to have gone quite quiet.

I've also not seen any more FOI responses from NICE, I am following a number of them on WDTK.

Sorry, feel like I'm playing catch-up a bit.

My understanding is that charities are now focussing on implementation--i.e., how to get the clinics to actually do what's in the guidelines.

I think this is sensible. There's a lot of work to do in getting medical education out there and we can make the clinics feel that, at long last, they can work with charities instead of being pitted against them.

 

[CRG]

I've not been firing on all cylinders of late, so haven't been paying too close attention to the RC shenanigans, but it feels like they have gone dark since the toy throwing episode. Would that be a vaguely accurate assessment of things? Doubt we have heard the last of them, but perhaps they have finally started to read the room a bit ( wishful thinking).

Anyone aware of what the UK ME charities are doing now/next with the GL having been published? They too seem to have gone quite quiet.

I've also not seen any more FOI responses from NICE, I am following a number of them on WDTK.

Sorry, feel like I'm playing catch-up a bit.

From another thread:

MEA email Newsletter includes the following:
The next challenge involves educating and training all health professionals on how to diagnose and manage ME and setting up a full UK network of hospital-based referral services where GPs can refer people for further help

 

[Sly Saint]

My understanding is that charities are now focussing on implementation--i.e., how to get the clinics to actually do what's in the guidelines.

I would have thought that getting the NHS England website to clearly explain just what is in the new guidelines would have been top of 'the list of things to do' followed by the other NHS sites then there is a clear point of reference to what is required.

The biggest omission is no information on PEM, which needs to be put in as the defining symptom of ME.
As it stands individual clinics can all make their own interpretations and cherry pick from the guidelines.

 

[Sly Saint]

Merged thread

Video: NICE u-turns on exercise therapy for ME sufferers: Alison Whale welcomes the move

TWR-UK

Alison, a blogger and advocate for people with disabilities and ME, tells Dave Piper that the use of GET and CBT originally came from an unwillingness by medics to believe ME/CFS sufferers had anything physically wrong with them. Alison says the retraction of advice by NICE is long overdue, and now fits with worldwide scientific understanding of the condition.



eta:

i'm speaking to alison whale who's a
blogger and advocate for people with
disability and me and we're speaking
today alison because
nice the health watchdog has
announced some rather remarkable news
they've decided that they're no longer
going to be advising that people with me
or chronic fatigue syndrome should use
graded exercise therapy or
cognitive behavioral therapy um unless
there's very certain circumstances with
experts on me and cfs actually advising
that
firstly do you welcome this news that
nice has changed its guidelines
i absolutely welcome this news it's it's
about time we've been waiting probably
30 years for this news to be honest um
and for all that time patients have been
reporting being harmed by these
treatments
so this
this guide outline is it's almost a
u-turn by nice on the last guideline
it's in line with international
scientific consensus
it scraps dangerous treatments
it recognizes me as a serious
physiological illness that affects
multiple systems and it recognizes that
exercise can be dangerous
just talking about that then because
what were some of the problems with
these two therapies the one which was
trying to get people to do more and more
exercise maybe despite what their body
was actually telling them and the other
cognitive behavioral therapy why were
these two
is actually potentially quite damaging
well the um
the therapies as they were done in the
uk were
and worldwide in fact they were based on
a discredited theory of me that the
illness was perpetuated by false illness
beliefs and
deconditioning that there was not
actually anything physically wrong with
these patients and that therefore you
could change the way they think and
increase their exercise and they would
and it would be a cure now that theory
has long been discredited by the best
science on me
um
and
nice have examined this science and and
found indeed that it is of very very um
low quality and shouldn't be taken
account of
in addition to that all the best science
on emmy now proves that this is a
multi-system physiological illness and
not only that but exercise scientists
can prove
that exercise actually damages me and
makes it worse so exercise scientists at
the workforce foundation have done two
day exercise tests and they can measure
the damage from people with me on day
two
it's also been found that we have a
problem generating energy within
ourselves
and that when we try to push to do more
it causes more
harm so it's actively
creating processes that damage our
bodies more
and another big problem with this um
with these treatments is that this false
narrative about what me is and how to
treat it means that people within me in
the uk
have been seriously neglected and not
had the medical care they need
there it's not an exaggeration to say
that only patients have died in the uk
directly because they can refuse the
medical care they need
because doctors have not believed in me
as a as a real physiological illness
lots of me sufferers haven't seen a gp
for years because gps won't do home
visits because they don't believe in any
or they don't
very severe patients are bedridden cared
for at home without medical support
most of us avoid medical contact
avoid hospitals because we know we'll be
dismissed neglected or at worst abused
and treated with contempt
and this is this is scandalous and this
all comes from the idea that me is
just false illness beliefs and
deconditioning and we just need to
exercise and think differently which has
long been known by the best science not
to be the case
what you're telling us allison is is
absolutely awful it's it's tragic and
hopefully
this could be a sign that we're moving
away from those sorts of beliefs i know
nice delayed the issuing of this
guidance it was supposed to come out in
august and they said that they delayed
it in order to speak to more people who
were living with me and cfs and get
their thoughts their opinions their
experiences
on this does the reason for that delay
give you some hope that we are here in
the uk
actually
treating
patients expertise
seriously now in these conditions
well in fact what happened was that the
publication was supposed to be april
and it was delayed for more people to
give feedback on the draft guidelines
that have come out in november
a lot of that feedback was from medical
professionals who weren't happy that get
and cbt were going to be scrapped
um
so that wasn't really about listening to
patients so much then in august they
were all ready to publish and within
hours of publishing it got paused it got
paused because not because of patience
they got called caused because the royal
colleges who represent
doctors
said again that they weren't happy and
they had concerns so the most recent
cause was definitely because of
objections from doctors leaders
thankfully there's been a big meeting
nicer stuck by the best scientific
evidence so we need to say very clearly
here that it's not about nice being
pressured by patients they've looked at
the evidence over the last three years
and what they're going with is an
international scientific consensus
as well as reports from patients
we sent in hundreds hundreds thousands
but there aren't there are thousands of
people who've been harmed but we sent in
hundreds of reports
of people who've been harmed by get
people who
went into clinics able to walk and by
the end were using wheelchairs who at
the beginning could work who've not
worked since we could look after
themselves who ended up bedridden
children who were mildly affected who
ended up tube fed and bedridden
the list just goes on and it is it is
horrific it's going to go down in the
history books as a huge medical scandal
and
nice
finally are going to be on the right
side of history in 2021 but those who
are still supporting these treatments
are not
and i suppose that brings us on alison
to how we as the christian community
respond to all of this as you said there
are many people who are
living with their conditions which have
worsened
over the years
as you've as you explained there
how can we in our churches actually
do more and do better to make sure that
we are doing what we can for people in
our midst who are living with me and cfs
i asked this question on an internet
support group yesterday to try and get
lots of different people's input not
just my own ideas and ended up with over
30 suggestions so you probably haven't
got time for those
i'll give you the headlines the one that
came over most strongly was please keep
in touch please kim it's so easy if
someone stops coming to church and that
goes on and on for people in the church
to move on with their lives and to stop
being in touch especially when that
person can't get to things or can't
manage phone calls or you know it's it's
very easy to forget them and they're
left alone at home being ill
communication is really important i
think ask the individual what they need
what would help them
are the things that can enable them to
come to church
maybe enable them to come even when
they're not well
um
things like comfortable seating
somewhere they could lie down
they're not feeling judged that they
could come late or leave early
carrying on with things that we've had
during the pandemic like doing things
over the internet and zoom
i've been able to join the morning
prayer meeting
since covid which i could never have got
to but it's on zooms and i'm able to go
which has been amazing being part of the
church
services have been on zoom so i've been
able to be involved with services when
i'm too ill to get there
um
things like that which
suddenly happened for the pandemic
suddenly included people with me who
hadn't been included for years in their
church communities
um
i think there's a lot about not judging
if someone looks well when they come
don't get excited thinking they're a
load better understand that that might
be the one thing they've done that week
and they might be in bed for the next
few days
offering practical help it's very easy
to say let me know if you need anything
it's very hard to ask for help and you
don't know what people mean by that so
say
do you need me to bring you a meal
would it help if or tell me what you
need and i'll try and find people who
can do that even if i can't do it i'll
try and find others who can
and i think they're keeping in contact
and showing people they're valued even
when they can't do things
our churches have a big culture of doing
things especially our most lively
evangelical churches it's all about
serving and volunteering and being on
committees and rotors and if you can't
do that
you feel like you have no value it's
easy to feel like you don't have a role
and you don't you're not a part of the
church family i think it's really
important to make people feel they're
still valued and they're still loved
and if you visit people
ask them how you can do that in a way
that
supports them and doesn't leave them
exhausted
arrive on time how long can they cope
with you being there
are they able to talk do they want you
to talk do they want you just to come
and sit quietly and read a book so
they've got some company or sit quietly
and pray silently
without them having to make an effort
but you're there you're providing
fellowship and company
all these things can make a massive
difference
alison well thank you for joining us
today
you

 

[Kalliope]

Fantastic opinion piece in the Norwegian newspaper Aftenposten by the professors Ola Didrik Saugstad and Rolf Rønning.

They start with sharing the news about the NICE guideline, and then provide some history (as Wessely, the psychosomatic approach), present research into ME, how ME patients have been mistreated (with emphasis on the children), and the importance of listening to patients and to take action to prevent more abuse towards the patients.

I hope the google translation is readable, because this was well worth a read!

ME-pasientene fikk rett!
google translation: ME patients were right!

Quote:
The report is a complete victory for ME patients' organizations and the professionals who have supported them. This should put an end to one of the biggest health policy and medical issues of our time.

24 health professionals, including Wyller, Fors, Reme and other known names from the biopsychosocial brigade have written a response. They seem rather furious.


Debatten om ME er IKKE over!
google translation: The debate about ME is NOT over!

There is no professional disagreement that changes in the immune system, nervous system and hormonal system can be seen in ME. But also cognitive processes can bring about such changes, something neither the Nice report, Rønning or Saugstad can shake.

...

We know that neither cognitive therapy nor graded exercise therapy are miracle cures, but we also know for sure that it sometimes works. An obvious explanation is then that physiological processes have "tracked off", without being directly linked to what set it all in motion. In that case, it is not unexpected that a cognitive approach can make patients healthier. There is no more hocus pocus!

Rønning and Saugstad are unfortunately right that many ME patients have been treated badly in the health care system. Ironically, this is due to the same misconception that they themselves doubt, namely that mental processes can not give "real" disease.

...

If they mean that ME patients no longer should be mistrusted and ironized, we could not agree more.

If, on the other hand, they believe that treatment in the form of a cognitive approach and / or graded exercise therapy must be discouraged, we could not disagree more.

 

[Snowdrop]

But also cognitive processes can bring about such changes, something neither the Nice report, Rønning or Saugstad can shake.

Does anyone here know what science they might be referring to with regards to cognitive processes changing the brain and how that applies. Is the brain (via CBT) changing symptoms or what is underlying those symptoms? And how can they tell that is what's happening?

Ironically, this is due to the same misconception that they themselves doubt, namely that mental processes can not give "real" disease.

I'd like to understand further if there is any evidence for any kind of illness that mental processes give rise to disease?

And their conclusion that it helps some -- is as always problematic. As has been said many times. Some people suffer harm, particularly from GET and no-one including them know who that might be. So they are prepared to accept that harm may occur while at the same time agreeing that patients have been treated badly.

And they have yet to show -- via evidence -- that those people who do recover with their help -- that it was in fact the treatment and not that the person was improving anyway. Because some people do. People who do no therapy at all have recovered naturally over time. But we don't know why or what percentage.

This is all old news to us. And they have been confronted with many questions many times which they have declined to answer. Instead choosing to restate their preferred message while answering nothing.

This is not how evidence works.

 

[Kalliope]

There was also an opinion piece by a psychiatrist (who among other was a co-author to Reme's Lightning Process paper).

Underlige påstander om ME-pasienter
google translation: Strange claims about ME patients

The authors don't mention that Nice refers to ME/CFS as a "medical condition" based on a biopsychosocial understanding, while "biomedical" excludes psychological and social factors in cause, disease development and treatment.

Fortunately, the Norwegian health care system is based on the biopsychosocial model that includes such conditions.

...

Nice further recommends that patients have an individual plan prepared, and that they receive broad supportive treatment that includes psychological and social factors. Graduated exercise therapy is recommended based on patients' energy levels.

Nice recommends (point 1.12.15): "Do not offer any medication or supplement to cure ME/CFS." So much for chemotherapy for ME/CFS.

 

[Jonathan Edwards]

We know that neither cognitive therapy nor graded exercise therapy are miracle cures, but we also know for sure that it sometimes works.

Somebody should suggest they are made honorary fellows of the Royal College of Physicians.
It is almost as if they are parroting that RCP statement. The more I hear from Wyller and his friends the more I realise how little they understand.

 

[Andy]

Letter from Carol Monaghan and other MPs from the All Party Parliamentary Group on ME to NICE about the guideline.

The new and long-awaited NICE guideline on Myalgic Encephalomyelitis (ME) has now been released.

As Chair of the All-Party Parliamentary Group on ME, I have campaigned with members of the ME community over several years for better ME medical care. I was delighted therefore to see many positive changes within the new NICE guideline, including the removal of support for graded exercise therapy (GET), a treatment shown to harm people with ME. In the coming months I will continue to press for the new guideline to be implemented in full so that people with ME can benefit from a more patient-centred approach.

https://www.facebook.com/CarolMonaghanMP/posts/4219523671508130

 

[FMMM1]

There is no professional disagreement that changes in the immune system, nervous system and hormonal system can be seen in ME. But also cognitive processes can bring about such changes, something neither the Nice report, Rønning or Saugstad can shake.

Thanks for this - pretty incredible.

So cognitive processes can bring about---changes in the immune system, nervous system and hormonal system

I suppose it would be too much to expect evidence to support that statement; although I suppose it depends what you mean by evidence.

 

[Simbindi]

I would have thought that getting the NHS England website to clearly explain just what is in the new guidelines would have been top of 'the list of things to do' followed by the other NHS sites then there is a clear point of reference to what is required.

The biggest omission is no information on PEM, which needs to be put in as the defining symptom of ME.
As it stands individual clinics can all make their own interpretations and cherry pick from the guidelines.

Absolutely. When I was in hospital the nurse that showed an interest in understanding ME/CFS went straight to that site to learn more (on his phone). That was incredibly frustrating.