New Zealand: ME Support news

hibiscuswahine

Senior Member (Voting Rights)
We have split the following posts from ME/CFS support group online forums.

This first discussion is about ME Support's work to make a policy on how it deals with the topics of brain retraining therapies within its Facebook group and elsewhere in the organisation.

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ME Support (a service run by ME Auckland) have done a literature review on brain retraining and associated "therapies"


They also surveyed their members.


They put out a position statement on brain retraining and a clear directive that brain retraining is not to be discussed in face to face support groups or on their Facebook support group
 
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I’m actually disappointed by this. They say there is evidence in favour of CBT, but there is not. The studies are too flawed.

In the summary in the first document:
From this brief review of the evidence, it appears that there is reasonably good evidence that CBT can help some people with ME/CFS or Long Covid. Among the variety of interventions classed under Gratitude, Mindfulness and ACT therapy, there is some evidence that some interventions work to alleviate symptoms, primarily fatigue, for some people. There is no evidence that approaches based on neuro-linguistic programming are beneficial to people with ME/CFS or Long Covid.
They treat positive results as «some evidence», which is just wrong. It might very well be all bias.
It is important to remember that most studies are small, and of variable quality. Many have a high risk of bias, and the evidence is therefore mediocre at best.
Then they go on to contradict themselves. «Reasonably good evidence» has suddenly become «mediocre at best». But even that’s an overstatement. The evidence is garbage.
Conversely, it is also true that absence of evidence is not the same as evidence of absence, i.e. just because there is no clear evidence, does not mean that any specific intervention definitely does not work.
This is also a very weird way to end the summary. If even then highly flawed and biased studies fail to produce clearly positive results, you can be pretty sure that it doesn’t work! Regardless, it’s backwards. It should say that no interventions should be used without evidence that it has any benefits.

According to Mona Jeffreys’s profile at Wellington, she works with «Evidence-based management of Long COVID». This review is not very encouraging in my mind..
 
(Disclaimer: I, among a lot of others, was consulted about the policy. I was not involved in the writing of it.)

I have found Mona to be very sensible.

I think there is probably an element of seeking to move people gradually from where they are, so as to not to lose them. Also, for sure, the organisations' board will have people with a range of views. Where the policy landed was probably a compromise, much in the way the NICE guideline was.

Those are good points @Utsikt.
 
@Hutan thank you for explaining.

But at what cost?

I have a strong dislike for compromises like these, because they are compromising between people’s egos and scientific rigour, causing unnecessary suffering to the patients.

Certain people involved in the process have chosen to put their own needs above the needs of patients they have an ethical, moral and legal duty to help. It’s reprehensible.
 
@Hutan thank you for explaining.

But at what cost?

I have a strong dislike for compromises like these, because they are compromising between people’s egos and scientific rigour, causing unnecessary suffering to the patients.

Certain people involved in the process have chosen to put their own needs above the needs of patients they have an ethical, moral and legal duty to help. It’s reprehensible.
and of course because those on the other side of the coin do rhetoric instead of normal, fair discourse. So instead of even noting it as a compromise, they just see they didn't get what they want anyway (so there is no less arsiness from them) but proceed to then copy-paste the one fop that someone threw in and isn't actually true but was a pacifier and use that like a badge of honour and twist the message to say 'see they confirm x is proven, we just haven't done the rest yet, cos they are so cutting edge'

The evidence I've seen from MS charities and eg their social media and websites btw has been that they have definitely started regularly including the very clear message of 'only use trusted sources of information'. It's in many of the main videos at the start often. But I haven't picked into whether they have the same issues ME/CFS does re: that when we look in more detail as to what that means and what those who might be trusted might also believe in or be fopping a bit

On the other hand I do slightly understand the double-issue that we have from those patients who have had other things and because of the nature of CBT being brainwashing get convincing it is life-changing and/or helped them with x. And yes people do have their beliefs of all kinds they want to give a try.

And that many patients early on are absolutely suffcatedly hounded into a space for many, many years where they think the stigma is 'don't be like those angry whingers' which of course is used to point the finger at the wrong individuals and just used for disability bigotry at 'those who won't get better' and have to be honest at nonsense not working. Anyone pooh, poohing certain things has this whole strange field and issues to deal with.

What has been done by the industry and people (and those who are around them that they trust and might genuinrly want to help, just can't be arsed to put as much effort into it as they would if it were themselves who had the consequences) are surrounded by noise-wise from is far from benign.

But part of me circles back to feeling like all that probably makes on balance it is even more important to get the line really right and make sure that something that has no evidence isn't fopped to make like it does. But that people are polite to others' beliefs I guess as long as they aren't misleading others ok.

But the more I watch what happens in circles over the years the more it seems to be that none of this is about anything particular to ME/CFS or pwme other than that they are the most vulnerable. And have been made vulnerable. And society is allowing certain others /industry to prey and take advantage inappropriately, so they target the most vulnerable - ie it is nothing to do with us or our personality or anything, and all about a grim aspect of human nature in others people wouldn't imagine happens. That's not an enjoyable additional message to get across to new people who are not even yet perhaps realising that under the hood of what they've seen so far it only gets worse and is even more empty than they realise - not that they just haven't seen the right person yet, or someone misunderstands or just hasn't tried other places for help.

We probably need to get good at working out how we can support people in those different natural reactions to that, and actually having practical support of some kind is vital to that too. Leaving people with nothing they can do and nowhere to direct their efforts or support is a problem we have. And there are plenty who take advantage of that. It's definitely an interesting look at human nature. Look at the spiel on certain other conditions where staff are told to just 'act confident' etc.
 
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On the other hand I do slightly understand the double-issue that we have from those patients who have had other things and because of the nature of CBT being brainwashing get convincing it is life-changing and/or helped them with x. And yes people do have their beliefs of all kinds they want to give a try.
You’ll find people in favour of literally anything, that’s why we do trials. And if the trials are negative, we’re not questioning the patient’s reality of being better (unless some form of gaslighting/brainwashing is involved), we’re just questioning their interpretation of the causal pathways. But apparently, we can’t do that.
We probably need to get good at working out how we can support people in those different natural reactions to that, and actually having practical support of some kind is vital to that too. Leaving people with nothing they can do and nowhere to direct their efforts or support is a problem we have. And there are plenty who take advantage of that. It's definitely an interesting look at human nature. Look at the spiel on certain other conditions where staff are told to just 'act confident' etc.
The practitioners have to be comfortable with saying «I don’t know», and the patients have to accept that there are no treatments.

But we already know how to do this. People get told by doctors that they have terminal cancer every day. That their loved ones have died. That they will never be able to walk again. That they child will not reach adulthood and suffer greatly while they are alive.

We know how to deliver difficult messages, and we know how to help the people that receive difficult messages. But for some reason, society has chosen that it’s easier to pretend like ME/CFS isn’t a problem, and in doing so, they’ve put all of the hardship that they should endure for others, onto the patients that are already suffering tremendously.

The irony, is that the most difficult message to get across here, is that entire fields of work are probably useless or even harmful, and we’d all be better off without them. So society keeps playing pretend so they can still feel important, and they’ve worked their way into power so they can ensure it will stay that way for as long as possible.
 
I’m actually disappointed by this. They say there is evidence in favour of CBT, but there is not. The studies are too flawed.
Ah, I have just read the Evidence Brief. I see what you mean. Yes, there are quite a few problems with that.

I was talking about the conclusion on CBT in the Position Statement, which seemed ok.
[Banning discussion of] Cognitive Behaviour Therapy (CBT) aimed at addressing ‘false illness beliefs’ or
curing ME/CFS and/or LC and therapies for functional disorders. Note CBT
aimed at coping with the challenges of a chronic health condition is allowed,
consistent with NICE guidelines.
 
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You’ll find people in favour of literally anything, that’s why we do trials. And if the trials are negative, we’re not questioning the patient’s reality of being better (unless some form of gaslighting/brainwashing is involved), we’re just questioning their interpretation of the causal pathways. But apparently, we can’t do that.

The practitioners have to be comfortable with saying «I don’t know», and the patients have to accept that there are no treatments.

But we already know how to do this. People get told by doctors that they have terminal cancer every day. That their loved ones have died. That they will never be able to walk again. That they child will not reach adulthood and suffer greatly while they are alive.

We know how to deliver difficult messages, and we know how to help the people that receive difficult messages. But for some reason, society has chosen that it’s easier to pretend like ME/CFS isn’t a problem, and in doing so, they’ve put all of the hardship that they should endure for others, onto the patients that are already suffering tremendously.

The irony, is that the most difficult message to get across here, is that entire fields of work are probably useless or even harmful, and we’d all be better off without them. So society keeps playing pretend so they can still feel important, and they’ve worked their way into power so they can ensure it will stay that way for as long as possible.
I think we agree completely on this. It isn't helpful at all to give fops to untruths of any of these being anything other than harmful particularly given its an illness where we have a restricted envelope and we are explicitly damaged/played to more severe illness by people game-playing with our energy, so the 'just try doing this extra' is BS.

I just think we need to complete the message - where we can at least say that we know that for some reason there is currently missing the bit where there is sensible support / adjustments in order that what is being suggested by those who know can actually be achieved (reduction in exertion) and yes we need something a bit more substantive on research than the 'need more research' line.

Instead I remember being closed-down. Because noone wants to talk about it. So you get told what you implicitly knew (excpet hoped something would make it a bit better) which is that you body can't do what your committments require of you. But noone even writes a letter to allow you to change your committments. And all those around you just think what they want.

It's desperate even if theoretically you get the correct advice, because the environment has been so carefully constructed over the years for us that we are undermined actively from following it.

That's the bit where I said "We probably need to get good at working out how we can support people in those different natural reactions to that, and actually having practical support of some kind is vital to that too."

Ie I wonder if having whole ‘missions’ that eg a whole family and friends can get behind early on when you are in that phase of wanting to show support and do something stage. Even if it’s just having a list of definitely trustworthy research funds to donate to, so gifts made to feel like helping don’t go to things that will either be twisted or useless, having definitely good and clear messages of what family can do to help someone or nice things to say that aren’t putting your foot in it (get well soon when in a crash?)

Charities etc need to look at that practical support. We need to stop having our time wasted by those who dangle the carrot of there maybe practical support (ie not psych but writing letters for adjustments, getting other comorbidities treated, providing advocacy to access services needed to allow people more financial or equipment support) just wasting time for at best advice we can't get done on our own or someone just counselling us as if we just wanted to whinge about there being no support when the energy to say what we needed is now wasted by that person who never intended to help. It's quite scary how empty everything turns out to be currently.

Clarity supporting pwme on this issue of what people need to family, friends, employers is another thing too. So pwme aren't saying x causes y amount of PEM and being laughed at because someone is reading info based on someone with milder levels or chronic fatigue, or getting shoved into sleep hygiene when they are in PEM or needing large amounts of rest - or at all, because it is ridiculously harmful like GET.

This leaves people more open to these predators. And in particular those who are around those who are ill and can indulge in wishful thinking without being on the butt-end of the consequences (another reason why we need to be accurate and not do fops)

I noticed going into the Times comments that on one of the articles there is obviously an organised collective spouting the identical one-liners Garner and chums have been trying to make catch on in the last few weeks with their invention of recovery day. And all the inferences they use as ad hominems the latest seems to be some non-catchy 'biomedical hegemony'

I certainly agree with this statement banning discussion because priming those brainwashed to do the same to others seems to be a biggie.
 
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I am not an active member of ME Support or ME Auckland but have been in their national Facebook support group a few years back, on and off for a couple of years until I finally decided that was definitely not the right place for me, on many fronts.

I got the email but did not participate in the survey but did get all this information yesterday so thought I would share.

There is no moderation in the ME Support Facebook group so basically it is anything goes - much like most online forums other than this one.

There are some people who are pro-science and the NICE guideline but even within this part of the group there is a wide range of science literacy and pseudoscience and misinformation is common but people are very open to hearing about the science from people with some expertise. But there is also a high proportion of the group who have strong beliefs on what causes and can treat ME and bring to the group all the stuff their integrative GP's, alternative medicine practitioners tell them, stuff off the internet, historical theories etc.

ME Support as an organisation that embraces all pwME/CFS and their beliefs (which I applaud as they are a provider of health support in Aotearoa/NZ and must provide safe cultural support with this provision). They provide good practical support for pwME and LC in Auckland. They get some charitable funding for paid full time support workers but most of the organisation are volunteers and many of them have ME. None are able or want to moderate the Facebook group. Conflicts in the group usually have one of these volunteers deleting comments or turning off comments for a post that they think violate group rules. Because the Facebook group is an extension to their service and available nationwide (so not just people in Auckland) it is a valuable resource for pwME to ask for recommendations on good GP's and specialists and general support like legal, work, family, partner and friend issues etc.

Unfortunately, I do not agree with all they do, especially the non-evidenced speakers in their lunch-time forums where people can join a zoom meeting from around the country to listen to people talking about Brain Retraining, Perrin's technique, Naturopathy, Medicinal Cannabis, Yoga, a pharmacist talking about how to get LDN, Physios discussing treatment of chronic pain etc.

People with LC who have been diagnosed with ME have been directed to this group and ME Support got government funding to do educational materials on LC and ME and although covers the science and lack of it - it also added all the alternative therapies that might help - supplements, nutritionists etc (the later which I do not agree with but that is the healthcare/support environment we have to navigate here).

There is no evidence for the use of Somatic Therapy in ME/CFS or Yoga Nidra but some members advocate for it so it was included in what was Ok to discuss in the Facebook group as "supportive".

I agree there is no evidence for CBT in any way for ME/CFS but often people are asking in the group where they could go for psychological support. I only know of one psychologist who I consider has the appropriate deep understanding of ME due to her family circumstances and is a very experienced and highly skilled practitioner. (I have worked in the same mental health service as her so have some knowledge of her). I have read positive feedback of her work within the group. She worked in private practice but I am not sure she is still practising now or whether she would give supervision to another psychologist.

So Mona is right that it would be very difficult to have this standard of psychological support in Aotearoa and most people would see counsellors or private psychologists who state they have expertise in chronic illness issues as per their professional website. There is no specific training for such expertise that I know of in NZ. Also pwME would have to pay for this private treatment as it is very difficult to get a free assessment in the public mental health service due to strict criteria and lack of resource.

So overall, I am pleased that Brain Retraining, LP, the Switch and all the other pseudoscientific psychological "treatments" are no longer up for discussion in the Facebook group and the Face to Face support groups in Auckland and the national Zoom support groups (and if they could stop the lunchtime forums that would be the icing on the cake in terms of advocacy.)

I hope more members of ME Support and ME Auckland come here to get a better critique of the science. I did try to get the word out there before leaving the group but gave up trying to explain things.

edited for a few points of clarification.
 
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