News from Australia

give disproportionate airtime to one person who claimed to have recovered from ME/CFS and rheumatoid arthritis. Scientific evidence states that there is no recovery from rheumatoid arthritis and less than 10% of people with ME/CFS return to pre-illness functioning
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This is the Pandora's box that medicine has thrown wide open. Many of the quacks who push the worst woowoo pseudoscience have suggested such things, and they have also been welcomed into the broad medical paradigm because of the parts they like.

Especially as this is broadly applied to chronic pain, why can't it be true for RA? There is literally no reason why not when the same "mind-body" arguments are applied. Not when the paradigm explicitly overlooks etiology. If it works for everything, then it works for everything! Pain is plastic! Rewire your brain!!

They keep choosing to overlook just how easy it is to apply the same pseudoscience onto everything. Yesterday there was some conference featuring Trump and RFK Jr where they talked about how autism has exploded, in a clearly unnatural way, and is likely mostly caused by lifestyle choices. A view that was long held by the medical profession, it doesn't matter that some dispute this openly now, it used to be "common knowledge". A view that can be applied as is to many chronic diseases, as long as one overlooks the parts they don't like. Which has been mainstream medicine for decades.

We've just been through 5 years of medical professionals and public health authorities telling everyone that getting COVID "the natural way" is better and safer. Why wouldn't people apply this to measles, polio, or any other pathogens? Predictably, they are! Even the death and morbidity rates aren't too different. The vast majority of people who contract measles and polio will be fine (as long as one doesn't look too hard into it). We've "beaten COVID" this way so maybe it's the way to eradicate those, by building a wall of herd immunity. The conspiracy fantasy communities don't even need to invent their own reasoning and messaging, they can straight up quote eminent professors of medicine.

They literally seem to never think of where slippery slopes lead to, confident that they can keep controlling everything. But they have lost control years ago, now what most people hear about this stuff comes from influencers. And on the issue of chronic illness there is zero separation between what the worst quacks are peddling and respected professors of medicine.

They are destroying the credibility of medicine and are entirely oblivious to it. And they will even be blaming influencers who simply repeat the same message as them. Human stupidity truly is infinite.
 
SNT Gatchaman said:
Message from eMerge CEO



I haven't watched but I think the link is
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I don’t get what was the point of the whole program. It was totally devoid of science and put people into a group of probably unrelated disorders. It had a whiff of Netflix Afflicted about it. The person who recovered from rheumatoid and ‘chronic fatigue’ through ‘holistic’ treatment and an attitude change was bizarre. Appearing was an integrative GP who charges a small fortune….. A bit disheartening.
 
From Geoffrey Hallmann

Between February 2025 and April 2025, the National Health and Medical Research Council (Australia) conducted a scoping survey for initial stages of the guideline development. ME/CFS Legal Resources provided a detailed response to the 3 questions asked and called for a revision of the committee make-up, engagement with the community and accommodation of disabilities.

https://mecfslegalresources.weebly....e_to_nhrmc_scoping_survey_-_27_april_2025.pdf

WARNING: Long Read. Contains information on topics that some may find distressing.

Executive Summary Extract: "The Scoping Survey represents the first steps in the guidelines development process. ME/CFS Legal Resources identified from the outset that the call for input from the patient community was non-compliant with the NHMRC’s Guidelines Handbook – leaving the marginalised elements of the ME/CFS Community out of the process

[...]

ME/CFS Legal Resources calls for the NHMRC to review the Scoping Survey and Committee composition against its requirements under Guidelines Handbook and calls for better compliance, improved communications with the ME/CFS and Long-Covid Communities, greater inclusion of marginalised communities in the consultation process, including methods of response and inclusion on the committee by way of sub-committee.
Whilst the Scoping Survey is just the first step of the process, it was a crucial step for assessing what to include in the guidelines. It was also an opportunity to demonstrate to the patient community that the NHMRC was going to carry this process out in a manner not seen in the ME/CFS community previously. Whilst some elements had positives – the survey highlighted multiple deficiencies and the importance of following the Guidelines Handbook for a community that is spread widely, vulnerable and in need of careful engagement to avoid producing a homogeneous document with little application for most."


Geoffrey Hallmann
Chair
ME/CFS Legal Resources Ltd
Website: https://mecfslegalresources.weebly.com/
Facebook: http://www.facebook.com/MECFSLegalResources
X: https://twitter.com/MECFSLegal
LinkedIn: https://www.linkedin.com/in/me-cfs-legal-resources-ltd-065482305/
 
Further news on the SBS Insight program “Invisible Illness” mentioned above:

SBS’s Insight accused of betraying people living with chronic fatigue syndrome who appeared on program​

Broadcaster receives hundreds of negative comments including claims it presented a potentially harmful and unscientific narrative

People living with ME or chronic fatigue syndrome who appeared on SBS’s Insight program have accused the broadcaster of betraying them in the final cut, which presented what they claim is a potentially harmful and unscientific narrative and favoured a person who said she had “cured herself” by “listening to her body”.

The SBS ombudsman is investigating their individual complaints, as well as one from Emerge Australia, the national advocacy body for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

There are hundreds of negative comments about the episode on the program’s social media pages.
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Disabled people used to feature in circuses and carnivals. Things have only slightly changed since then. Human nature sure hasn't. And in this case it's almost entirely the fault of the medical profession, creating and amplifying the justifications for this dreadful spectacle.

Almost nothing said in that program would be objectionable to the average physician, let alone the worst quarter of them. The medical profession helped remove a lot of the old stigmas, but their foolishness and egomania have managed to create new ones that are just as horrible. Shame on those responsible for this, which is sadly pretty much every single one of their institutions.
 
Thank you @Sarah Annesley, for taking the time to put your reputation on the line for people with ME/CFS.

I would quibble with leading with 'complex' and some of the assertions about what studies have found e.g. changes in brain structure. Even the finding of changes in cerebral blood flow, which I'd like to be true, is not firm. But there is a lot of very good stuff in the article, here's an example on the forthcoming new guideline.

In Australia, doctors often receive little formal education about ME/CFS.

Most commonly, they follow the Royal Australian College of General Practitioners’ clinical guidelines to diagnose and manageME/CFS. These are based on the Canadian Consensus Criteriawhich are considered more stringent than other ME/CFS diagnostic criteria.

They include post-exertional malaise and fatigue for more than six months as core symptoms.

However, these guidelines are outdated and rely heavily on controversial studies that assumed the primary cause of ME/CFS was “deconditioning” – a loss of physical strength due to a fear or avoidance of exercise.

These guidelines recommend ME/CFS should be treated with cognitive behavioural therapy – a common psychotherapy which focuses on changing unhealthy thoughts and behaviours – and graded exercise therapy, which gradually introduces more demanding physical activity.

While cognitive behaviour therapy can be effective for some people managing ME/CFS, it’s important not to frame this condition primarily as a psychological issue.

Graded exercise therapy can encourage people to push beyond their “energy envelope”, which means they do more than their body can manage. This can trigger post-exertional malaise and a worsening of symptoms.

In June 2024, the Australian government announced A$1.1 million towards developing new clinical guidelines for diagnosing and managing ME/CFS.

Leading organisations have scrapped the recommendation of graded exercise therapy in the United States (in 2015) and the United Kingdom (in 2021). Hopefully Australia will follow suit.
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Thank you for being vocal about this!

The main messages about the guidelines and outdated views of what ME/CFS is are spot on.

Because of where we are, I’m including these considerations as well, they have become a bit of a pet peeve of mine.
While cognitive behaviour therapy can be effective for some people managing ME/CFS, it’s important not to frame this condition primarily as a psychological issue.
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I don’t think there is any evidence that CBT can improve the management of ME/CFS. NICE found that CBT is not effective when used as a cure, and they found no evidence assessing supportive CBT for ME/CFS.

It’s plausible that certain types of theraphy would be helpful for some patients in terms of managing the challenges of being severely ill in general, but all of those approaches would have to 100 % validate their lived experience, the trauma, gaslighting, etc. that is usually caused by certain branches of CBT.

And there is no evidence that any «helper» might improve the pacing by the patients, other than general education about what pacing is, and giving them the help that they themselves believe that they might benefit from. Most clinicians understand less about pacing that most patients, so they should stay out of it.
This is especially relevant after the COVID pandemic and with the emergence of long COVID. Studies indicate more than half of those affected meet stringent clinical criteria for ME/CFS.
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This has been discussed elsewhere, but those studies are not appropriate for assessing the general prevalence of ME/CFS among people with lasting symptoms following a covid infection.
In times of acute illness we should resist the temptation to push through. Choosing to rest may be a crucial step in preventing a condition that is much more debilitating than the original infection.
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I don’t think we have evidence that resting early during the onset might prevent someone from having ME/CFS a year or two later, i.e. preventing ME/CFS. It’s plausible that sufficient pacing (which includes sufficient rest and limitation of exertion) might prevent some otherwise avoidable deterioration, but the studies are lacking here as well.

That is not to say that we shouldn’t advice resting when you experience PVF or ME/CFS-like symptom patterns early after an infection, because we know that the opposite doesn’t help and might cause harm. Just that we don’t know if it has any added benefits.
 
Doherty Institute: Real-time study to reveal crucial facts about persistent illnesses post-COVID

A landmark study led by the University of Melbourne, the Doherty Institute, the Kirby Institute at UNSW Sydney and the University of Adelaide aims to understand how common these persistent illnesses are and use this information to inform clinical practice and improve health and wellbeing.
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The OUTPOST study will follow symptoms in people aged 12 years or older from the onset of acute infection with one of the ‘big three’ respiratory viruses – COVID, influenza (flu) and respiratory syncytial virus (RSV). There will be check ins at 6 weeks, 3 months, 6 months and 1 year, providing real-time insights into the impact of the infection and the time taken to recover.
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Co-lead investigator Emeritus Professor Andrew Lloyd, Head of the Viral Immunology Systems Program at Kirby Institute says, “the persisting illness can range from mild to completely debilitating, impacting both physical and mental health, leading to poor social and emotional-wellbeing and decreased education and employment.”
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Link to The OUTPOST Study.
 
Well, that's interesting. I was thinking, great, and about time, another Dubbo-type prospective study, and maybe we can finally get some decent data on the incidence of ME/CFS after Covid-19. But, I expect most members here know Andrew Lloyd, he's a notorious BPS proponent. One time he supervised a study that put up posters recruiting participants for a study on female hormones with 'Are women with CFS ovary-reacting?'.

Oddly, he was deeply involved in the Dubbo study, which found that psychological factors didn't have any impact on the likelihood of developing post-infection fatigue syndrome. The concern is that he has learned from his long experience promoting CBT and GET and being friends with key UK BPS people, and this study will be horribly biased, producing some data with which to pretend the Dubbo study never happened.

He's an odd character, Andrew Lloyd. It's hard to work him out. I think possibly he started out genuinely wanting to find the answer to CFS, and, when it wasn't easy to find, he fell into BPS - although I don't know. David Tuller has interviewed him once or twice I think. Perhaps Lloyd is seeing which way the wind is blowing and is re-making his legacy? That's probably too much to hope for. It's certainly going to be interesting watching this study unfold.

Melbourne University is Chris Armstrong's home institution. @MelbME - I haven't looked yet, but is your team involved at all? Do you know the people involved?

(Sorry, tag of David Tuller failed)
 
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There's this article co-authored by Lisa Sanci and acknowledging a contribution by Lloyd. Both are leads on the OUTPOST study.
It's remarkably okay:
However, there is consensus on what constitutes good care. Clinicians seeing patients with possible long COVID should:
  • validate the person’s experience of symptoms and the impact their symptoms are having on their functioning, particularly when the cause is not clear
  • diagnose and treat any other health conditions that are part of the picture
  • support people to minimise the impairment their symptoms cause by pacing of physical and cognitive activities. Importantly, this doesn’t involve pushing through fatigue.
These steps are not a cure but they may improve a person’s ability to function in their day-to-day life, at work and to fulfil their caring responsibilities.
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It just would be great to know that the researchers know what PEM is and are going to measure it in this study.
 
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However, there is consensus on what constitutes good care. Clinicians seeing patients with possible long COVID should:
  • validate the person’s experience of symptoms and the impact their symptoms are having on their functioning, particularly when the cause is not clear
  • diagnose and treat any other health conditions that are part of the picture
  • support people to minimise the impairment their symptoms cause by pacing of physical and cognitive activities. Importantly, this doesn’t involve pushing through fatigue.
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That's not really "good care", though. Or I can't see it that way, personally. The second point is doing most of the heavy lifting in terms of what good care would be, but it doesn't apply to most of the issues so it's mostly a throwaway. The other points mostly amount to "don't be a jerk", or are about as significant, anyway. "Not awful" is not an acceptable professional standard. At least, not in other professions. In health care, it clearly is, I'll never understand why.

At best it's the absolute bottom for acceptable care, as long as clinical outcomes aren't considered. Which should be, and is still above the usual, which is harmful don't-care. But this is still far below what even amateurs can do with a fraction of the resources at our disposal.
 
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