'Recovery Is Possible: Lessons in ‘ME/CFS’ Recovery from YouTube [Goldsmiths]

rvallee said:
And it would be so much less awful if all of this wasn't basically reasoned using all the logical fallacies in a trench coat. I've never before seen the narrative of "some people want to recover / prefer to stay ill" from medical professionals being more prominent than this year. Things really are worse than ever, even as we slowly inch closer to a solution
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After almost a year away from the forum due to an enormous crash and not being on any social media, I have been really taken aback by how much brain training and recovery stories have exploded.

MrMagoo said:
See what they describe is what I’d call “learning to live well with your diagnosis”. I wouldn’t call it recovering or recovery.
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Exactly!

It's not often I feel the desire to quote from BACME materials. I know the report includes a caveat that 'recovery' is as described by the various interviewees. Nevertheless, even BACME's primary care guidance (Dec 2022) states this about recovery.

Prognosis
There is a lot of active research in the field of ME/CFS, but the reality is it currently
remains a difficult condition to research due to the lack of consistent biological markers of illness. Consequently, data on recovery is limited.
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Some patients with ME/CFS do recover so it is important to adopt an optimistic approach to its management. However, the reality for many patients is that it affects their lives for many years, and some do not make a good recovery, so it is helpful to adopt a Long-Term Condition management type approach.
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It has been suggested that approximately 5-20% of people with ME/CFS may eventually make a full recovery, but this may take years and involve making significant life changes. Around 60% of people with ME/CFS may see improvement
in symptoms and/or level of function over time but will need to continue to manage their condition. Approximately 20% of people with ME/CFS continue with long term debilitating symptoms. A proportion of patients will recover sufficiently to a good level of occupational / social function but may experience relapses or setbacks triggered by a number of factors such as viral or bacterial infections or other illnesses and significant life stresses.
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I don't now where the 60% comes from unless it PACE?
Prognosis may be different for children and adults and it is generally accepted that
children are more likely to see improvement or recovery over time.
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It can be helpful to reflect with patients about what recovery may look like. For some
patients, the stressful or busy lifestyle they were leading before becoming ill may have contributed to their symptoms once they became unwell. Consequently, recovery would not be aimed at returning to that same lifestyle but more a moving on to a different way of managing demands.
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The beginning of the Executive Summary

.
In recent years, the phrase ‘recovery is possible’ has become synonymous with the chronic
fatigue syndrome (CFS) recovery community and for good reason. As anyone with first-hand
experience will know, people with CFS are told that they will not recover—including by doctors.
According to the analysis of first-hand social media accounts shared in this report, the medical necessity of this messaging is challenged and an alternative set of messages accompanies the
experience of recovery.

CFS, also known medically and in the UK patient community as myalgic encephalomyelitis (ME)
or more commonly ME/CFS, is represented to the public as follows:

A long-term condition that can affect different parts of the body. The most common
symptom is extreme tiredness. The cause of ME/CFS is unknown. … While there’s
currently no cure for ME/CFS, there are treatments that may help you manage the
condi9on and relieve the symptoms. Treatments include energy management, cognitive
behavioural therapy and medications prescribed for pain or sleeping problems. … People
with ME/CFS will need to adapt their daily routine and pattern of activities on a long-
term basis. There may be periods when your symptoms get better or worse.
(National Health Service 2026)

The National Health Service (NHS) webpage further directs people to the ME Association—a
charity that has consistently opposed public discussion of recovery and those who represent its message
 
1800-word article about one of the recoverees, now coach:

I struggled with chronic fatigue syndrome for years. Doctors told me I'd never recover... but I've not had a bout for 20 years thanks to these lifestyle changes - and I didn't need extra medication​

By MEIKE LEONARD, HEALTH REPORTER
PUBLISHED: 12:11 BST, 1 October 2026
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For Jan, it was devastating to be told at a chronic fatigue clinic that she must come to terms with never being back to normal.
'It was soul crushing,' she says. 'And I refused to accept it.'

And she didn't. Today, Jan is one of the miraculous 10 per cent of ME/CFS patients who has had a full recovery.
Indeed, it has been more than 20 years since Jan's last bout of extreme fatigue.

It may sound miraculous. But Jan, now 65, says she made a series of lifestyle changes to overcome her debilitating symptoms.
Now, she hopes to encourage others with ME/CFS to do the same.

The second edition of her book, Breaking Free from Chronic Fatigue and Long Covid Symptoms, which details her experience, was published in July. And Jan now runs a programme, called Reset to Thrive, which provides coaching and teaching resources to others with CFS or long Covid.
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Jan's theory is that you can overcome chronic fatigue syndrome by 'rewiring' the brain's response to stress.
And it is not without its critics.
Patient advocacy groups strongly caution against claims that the technique can 'cure' ME/CFS and there are very limited high-quality, peer-reviewed clinical research papers examining its effectiveness.

But a number of smaller, pilot studies have shown some promising results. A Goldsmiths, University of London analysis published this summer suggested that adopting a shift in mentality around ME/CFS, which Jan advocates, may help patients improve.
Interviewing 75 people who claimed to have recovered from the condition, researchers found that 95 per cent retrospectively linked their recovery to a change in mindset – with 80 per cent describing a similar 'conscious decision to recover'.

Nearly all said they adopted a 'mind-body' or nervous system model where they moved from seeing the illness as fixed and irreversible to something that is physiological but changeable, linked to stress, fear, and dysregulation.

Experts made sure to clarify that the findings do not mean that simply willing yourself to get better will cure ME/CFS.
But researchers said the findings should caution doctors against making definitive claims that patients will not recover.
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'Belief in recovery was the universal among those who got better,' said lead researcher Dr Sarah Cefai.

'Withholding that possibility may be one of the most damaging aspects of current care. What we tell patients matters. In conditions where medicine has limited answers, removing hope may worsen outcomes and recognising recovery may be one of the most powerful interventions available.'
Jan says she's walking proof of the technique.
'I clung to the fact I could recover by focusing on small milestones, like getting out of bed each day,' she says.
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And a growing body of research suggests there may be a physiological explanation as to why some people are more prone to ME/CFS – with recent studies linking the condition to both DNA changes and immune system dysregulation.

'What we know happens is that the brains of people with ME/CFS think that they are ill or under extreme stress, and this stops the body from producing energy, as a protection mechanism,' says Professor Dmitry Pshezhetskiy, who specialises in treating ME/CFS.

'We think it's due to some sort of interplay between the brain and the immune system.'
People who were fitter or healthier before developing ME/CFS are often more likely to recover, says Prof Pshezhetskiy – but very few do.

'When I see someone who has improved, I tell them they are extremely lucky,' he says. 'And there is no one-fits-all reason for it.'
But Jan believes that her approach – which she's dubbed the FEARLESS technique – can help others facing the condition.
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'I had been living an incredibly stressful, sleep-deprived life for years – constantly doing things for others at the expense of my own health,' she says.

'So the first thing I had to do was strip away all of the stress and fear around my being ill – worrying that I would lose my house and job, which I eventually did.
'Then I was able to focus on detaching myself from my symptoms – and believing that I can overcome them.
'Each time I achieved something – even as minor as crawling to the bathroom – I celebrated it, rewarding myself for the effort. And my brain started noticing.

'Any stress response can be overcome. And over time, mine began to reset. I had a million setbacks but each time I was back in bed or at the point of crashing, I focused on the fact that I had done this once and could do it again, my body just needs a bit of a break.'
After a year of hard work, Jan finally felt more or less back to normal – and was able to return to work. But she hadn't, she says, properly overhauled her lifestyle – and suffered a devastating relapse of illness three years later.

'It was really hard, as I started to believe then that I would never recover,' she says.
But it was then that Jan instituted serious changes – divorcing her second husband, and massively cutting down her working hours, which were then 70 hours a week.
'I had to learn to say no to people,' says Jan. 'I needed to be around people who were nurturing – not ones who constantly needed things of me. I had to learn assertiveness and how to walk away.'

Though the separation was devastating, Jan ultimately found herself in a much better place mentally, and was able to undergo the same long process to recovery as she had during her first flare up of MS/CFS.
Today, it's been nearly 20 years since that last relapse – and she hasn't experienced another bout of extreme fatigue.

'Now, I take breaks whenever I need – I know it's OK to sit down and have a cup of tea. And I listen to others when they tell me I need to stop,' she says.
'Another massive thing was to set boundaries – I had to lose my second husband because I couldn't always be doing things for others and putting up with crap all the time.

'Now I'm with such a lovely man and have properly incorporated joy and leisure into my life – whether that's walking the dog every day or spending time with my family.
'I'm finally able to have fun without all of the debris around me.'
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Chandelier said:

I struggled with chronic fatigue syndrome for years. Doctors told me I'd never recover... but I've not had a bout for 20 years thanks to these lifestyle changes - and I didn't need extra medication​

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Interesting comment section on Reddit:

Her stories get even sillier. https://www.mirror.co.uk/news/uk-news/mum-went-bed-simple-cold-37739655
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Mum went to bed with cold and didn't wake up for six weeks as family tried to keep her alive​

Jan Rothney thought she just had a simple cold – but the Devon woman woke up 45 days later to discover she had been diagnosed with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome
​

Oh that IS ridiculous. She didn’t wake up for 45 days, but nobody called a doctor because she was still breathing?? Sure, Jan
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Some other comments:
If meditation master, researcher and conciousness philosopher Ken Wilber can't cure his ME with meditation, you and I sure as hell aren't going to either. And neither is "Buy My Book and Online Course" Grifter.
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Preach.

Also, i had no idea Ken Wilbur has it. Makes two meditation masters I know of then (the other being Tucker Peck, less well known, and his was covid caused)
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I have noticed some of the biggest promoters of brain retraining describe a burnout type of situation with a lot of stress, and, unsurprisingly, feeling much better once they change their home and work situations to greatly reduce stressors.

Many of us with ME/CFS, like me, have probably also been told, now you have stepped away from this or that major stressor - difficult relationships, stressful work, extra demands, menopause, we too will recover. Only we don't get better because the stressors were not the cause or perpetuating factors in our illness.
 
Chandelier said:
1800-word article about one of the recoverees, now coach:
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The vast majority of reader Comments beneath the Mail article are sceptical or scathing about the alleged 'cure' and the making money out of desperate sick people.
.
 
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Trish said:
some of the biggest promoters of brain retraining describe a burnout type of situation
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Which makes me wonder what the correlation is between undiagnosed/late diagnosed neurodivergence and misdiagnosis of ME/CFS and people "recovering from ME/CFS" via brain training and other "lifestyle management" approaches.

Especially given the high prevalence of ME/CFS in women, proportionally, and the historically very low diagnosis rates of ADHD and autism in women, coupled with lack of a biomarker/test for ME/CFS.

I am struck by how many women are misdiagnosed with depression and/or anxiety when they are actually neurodivergent, or have the former as a consequence of the latter, and find that management of their ADHD improves their "ME/CFS".

I am fascinated by this idea, as someone who got very unwell with pneumonia and complications after massive stress (2nd redundancy, family death) and absolutely redlining my energy for my whole life (full time work in a high pressure job + part time study for over a decade) as a way of coping with undiagnosed neurodivergence myself, and just did not recover from a very serious illness when it hit and was left with ME/CFS as a consequence.

I seem to be seeing a lot of late diagnosed neurodivergence in pwLC on social media.

Again, if only there was funding to investigate :banghead:
 
"I am honoured to be part of your excellent book. I have the highest respect for your work."​

– Paul Garner, professor emeritus, Liverpool School of Tropical Medicine

www.resettothrive.co.uk

Reset to Thrive | Achieve Wellness and Personal Growth

Welcome to Reset to Thrive! Discover our comprehensive wellness programme designed to help you self-regulate and balance your autonomic nervous system. Explore resources, courses, and expert guidance to recover from chronic fatigue, long COVID, and other post-viral conditions. Join our community...
www.resettothrive.co.uk www.resettothrive.co.uk
 
From the recommendations at the end of the Executive Summary of the study:

1. Direct resources towards recovery research
Research on CFS would benefit from the inclusion of recovery, and CFS research funding
ought include recovery as an object of study. Social and cultural research could be brought
into conversa2on with psychology and other disciplines to offer a more meaningful account
of the lived experience of recovery.
The existing knowledge of people who have been recovered can be studied and brought into
the realm of institutional legitimacy, along with existing non-medical approaches to
recovery. Non-medical approaches to recovery should be explored through pilot studies. The
experiences of those who have recovered should be objects of research in their own right.
People who have recovered ought to be included as stakeholders in (1) news media, (2)
research, (3) health policy and (4) patient support and advocacy.
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My bold
The focus on a pharmacological solution should be held in balance with the evidence of
recovery—not only in the recovery community but held in wider society.
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2. Share recovery stories wherever possible
Social and cultural evidence shows that hope is a vital resource, communicated effectively by
first-person accounts of recovery. The public sector and patient support groups should share
stories of recovery and send positive messages of hope to people who are unwell.
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Maat said:
"I am honoured to be part of your excellent book. I have the highest respect for your work."​

– Paul Garner, professor emeritus, Liverpool School of Tropical Medicine

www.resettothrive.co.uk

Reset to Thrive | Achieve Wellness and Personal Growth

Welcome to Reset to Thrive! Discover our comprehensive wellness programme designed to help you self-regulate and balance your autonomic nervous system. Explore resources, courses, and expert guidance to recover from chronic fatigue, long COVID, and other post-viral conditions. Join our community...
www.resettothrive.co.uk www.resettothrive.co.uk
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Ah, Jan Rothney, 'Reset to Thrive - Achieve Wellness and Personal Growth' (in the Mail and Mirror articles) appears to be intent on Empire Building.
It's just patronising to presume to impose various over-used 'personal growth' tropes on sick people.

The personal growth world is such an overcrowded commercial hotbed of exploitative, hackneyed nonsense.

I seem to recognise her name from some years ago, can't remember where.
.
 
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Lou B Lou said:
I seem to recognise her name from some years ago, can't remember where.
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RainbowCloud said:
• Jan Rothney (aka Jan Oakney) who used to teach the LP and has rebranded herself without mentioning the LP (though her old site is still visible on waybackmachine.com) and launched a book that helps people recover from ME with similar ‘you can think yourself better’ philosophies.
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Andy said:
She published a book in 2022, https://s4me.info/threads/new-book-breaking-free-pasc-me-and-covid-19.27540/
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The article is about the second edition of her book.
 
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Laying it thicker than a Facebook story where the blue-haired lady with nose piercings is revealed to be a bulky old man who was trying to get mothers addicted to fentanyl, and a likeness of Jesus appeared in the clouds and winked and everyone clapped when the old man was smote, or whatever.

Literally nothing she describes has anything to do with ME/CFS. She talks of toxic relationships, of working 70 hours per week, and massively reducing that. Complete nonsense, and there is zero sense that a fatigue clinic would tell someone with that profile that she wouldn't recover. There isn't a single credible detail in this, and probably the only factual detail is that she is selling a book to promote her coaching business.

It would be fair to say shame on the DailyMail, but frankly I would use this instead to tie the quacks to this, how everything they say is the exact same thing as this obvious scam.
Maat said:
"I am honoured to be part of your excellent book. I have the highest respect for your work."​

– Paul Garner, professor emeritus, Liverpool School of Tropical Medicine

www.resettothrive.co.uk

Reset to Thrive | Achieve Wellness and Personal Growth

Welcome to Reset to Thrive! Discover our comprehensive wellness programme designed to help you self-regulate and balance your autonomic nervous system. Explore resources, courses, and expert guidance to recover from chronic fatigue, long COVID, and other post-viral conditions. Join our community...
www.resettothrive.co.uk www.resettothrive.co.uk
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Exactly. Let them own this. Not that I expect much out of it but this should be brought up every time these people are allowed to promote their scam. Cochrane owns this. Wessly owns this. Chalder owns this. The BMJ and Lancet own this. Flottorp owns this. Hell, the Norwegian government owns this. They are all tied at the hip with a bunch of scammers and they are promoting exactly the same garbage.
 
• Jan Rothney (aka Jan Oakney) who used to teach the LP and has rebranded herself without mentioning the LP (though her old site is still visible on waybackmachine.com) and launched a book that helps people recover from ME with similar ‘you can think yourself better’ philosophies.
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It always amazes me, in a bad way, why people even pay royalties to the LP company and other promoters, when all of this is completely generic. Everyone can simply whip up their own version of it, there is nothing that can be copyrighted other than the branding. Hell any current AI could simply write down a full program in a few minutes, and they can get free advertorials in newspapers doing all the marketing for them.

There is zero reason to pay the man when it doesn't even matter, everyone who promotes generic junk has as much merit as any other, what with framing everything as vaguely "mind healing" with no meaningful differences between any of those programs, or even typical rehabilitation.
 
Are we doing brain train bingo?

- told by clinic she would never ever ever recover, 100%
- “patient advocacy groups” say there’s no cure
- reference to recovery research (by a Sociology/Religion PhD)
- calls it CFS
- now works as a coach “helping” others recover
- woof!

I call house!
 
Being a senior, my mind drifted to how long cowpat bingo would take to play, compared to bingo in senior residences, and how much waiting around would be involved.

I discovered cows poop up to 15 times a day and produce up to 21 tons of manure annually.

Whereas chicken shit appears 12 - 50 times a day, roughly every 30 mins, as chickens have a fast metabolism.

I've been on this forum too long, or it is just my pacing automatically kickin' in?.:oops:
 
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