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Robert Saunders (aka McMullen)

@roberthmcmullen.bsky.social
470 followers 293 following 287 posts

Author of "stranger and stranger”, letter writer, advocate and fundraiser for biomedical ME/CFS research.

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Reposted by Robert Saunders (aka McMullen)
Action for ME @actionforme.bsky.social · 01/10/2026
Register for the 4th PRIME webinar: The Neurology of ME/CFS 🗓️ Weds 28th Oct 🕑 2-5pm GMT 📍 Online via Zoom Join leading international researchers to explore neurology in ME/CFS & why it’s become an important area of research. Register & read more 👇 www.actionforme.org.uk/register-for...
Graphic from Action for ME promoting the 4th webinar in the PRIME project webinar series about neurology in ME/CFS. Text in top details the webinar with photo of DNA in the bottom half. Text along bottom details the date of Wednesday 28 October and time of 2-5pm GMT.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 27/09/2026
My hope is that DecodeME + other research may lead to a significant shift. Jonathan Edwards has said that many more scientists & physicians he is contacting are taking an interest now. Things have been shifting slowly for a long time but we may be approaching a tipping point.
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Reposted by Robert Saunders (aka McMullen)
The Guardian @theguardian.com · 24/09/2026
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 24/09/2026
And, more importantly, that it will put pressure on governments and other bodies to effect positive change.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 24/09/2026
Thank you for your support, Natasha.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 24/09/2026
@alastaircampbell2.bsky.social @rory-stewart.bsky.social Please will you invite George Monbiot onto @therestpolitics.bsky.social to discuss the ME/CFS scandal?
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 24/09/2026
Many of us have spent a great deal of time over many years trying to get these issues into the media. Thank you not only for writing about about ME/CFS but also for your diligence in trying to get the details right. I sincerely hope that this will lead to wider media coverage and understanding.
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Reposted by Robert Saunders (aka McMullen)
Natasha Devon @natashadevon.bsky.social · 24/09/2026
George will be coming on my show this weekend to discuss this very important article.
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
With great thanks to the hundreds of people who gave me their testimonies. If I hadn't said "stop" after a few hours, it might have been thousands. The sheer scale of this scandal is hard to get your head around. 2/2
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 24/09/2026
Also worth reading George’s 2024 article in which he discribed the neglect and mistreatment of people with ME/CFS as “the greatest medical scandal of the 21st century”: www.theguardian.com/commentisfre...
theguardian.com
‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot
The notion that this illness is psychosomatic is having devastating effects, says Guardian columnist George Monbiot
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 24/09/2026
“Across the decades, millions of people [with ME/CFS] have been neglected, dismissed and mistreated, and still it goes on … there has seldom been a stronger case for a public inquiry.” Thanks to @georgemonbiot.bsky.social for another excellent article on MECFS: www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice. #ME/CFS
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 21/09/2026
Happy to help again if needed. I’ve sent you an email.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 21/09/2026
The S4ME forum has started a thread for members to share stories of their ME/CFS journeys in up to 10 sentences: s4me.info/threads/your... The WE&ME foundation will ask some contributors if they can use their stories for advocacy. This is my story. Please consider sharing yours on @s4me.info
Once an academic scholar and keen sportsman, my ME/CFS symptoms came on suddenly in 1992 when I was a 19 year old student, following tonsillitis, suspected glandular fever and two courses of antibiotics. The transition from someone who was essentially well and able to participate in normal activities to someone who was very obviously unwell and incapacitated was marked and sudden. However, I suspect that there may have been something wrong with me prior to that as I had been unusually tired and prone to infections for a few years, along with unidentified problems in my knee and shoulder, which had limited my ability to run and play racket sports.
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After struggling to live independently on and off for about 18 months, I returned to live with my parents fulltime in 1994. If I had known then what lay ahead, I would not have been able to cope, and I don’t know if I would still be alive. For about seven years I was almost completely bedridden, in excruciating discomfort, urinating into a bottle and eating meals in bed. Now aged 53 I am mostly housebound and cared for by my 80 year old mother in a wheelchair adapted annexe on the side of her house.One can be philosophical about loss and incapacity – about absence – but there is no philosophy that can overcome the presence of extreme physical discomfort and pain; of constantly feeling unwell. I am luckier than many people with my diagnosis in that some of my family and friends have been extremely supportive, and I have had some kind and helpful doctors, but like most people with ME/CFS I have also been let down, mistreated, ridiculed and abused, both personally and institutionally.

Love, solidarity and productivity, however limited, help to get me through the days, but I’m not sure that I could keep going without hope – hope of scientific understanding and a better quality of life.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 17/09/2026
Welcome to BkueSky @alemmatthees.bsky.social For those who don’t know, Alem is the ME/CFS patient who took QMUL to tribunal to obtain the PACE trial data and won. More here from @davetuller1.bsky.social: virology.ws/2026/01/02/t...
virology.ws
Trial By Error: My Unexpected E-Mail Exchange with Alem Matthees | Virology Blog
By David Tuller, DrPH In recent months, one of the most high-profile people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)—Australian Alem ...
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John Peters @johnthejack.bsky.social · 17/09/2026
Letter from @roberthmcmullen.bsky.social in Times today
Text:

Sir, Whatever the legalities, Daniel Finkelstein is right to argue that it would be dangerous to abandon the rule of law in order to prevent Reform UK from receiving £72 million from two crypto billionaires. While he quotes the former lord chief justice Tom Bingham, I am reminded of the words spoken by Sir Thomas More in Robert Bolt’s A Man For All Seasons: “Yes, I’d give the Devil benefit of law, for my own safety’s sake.”
Robert Saunders
Balcombe, W Sussex
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 17/09/2026
Well spotted. Interesting aside: Paul Scofield, who won an Oscar for playing Sir Thomas More in A Man For All Seasons, lived in my village. He was the antithesis of modern celebrity – a genuinely humble man who lived in a relatively modest house with an open gate and drove a beaten up old Fiesta.
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Tom Kindlon @tomkindlon.bsky.social · 09/09/2026
10 years today, after a David vs Goliath FOI legal battle that damaged Alem Mathees, White et al were forced to release data from PACETrial (that cost UK taxpayers £5M) showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS. Please remind the world #MEcfs #PwME #CFS
 Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
Carolyn E Wilshire  1 , Tom Kindlon  2 , Robert Courtney  3 , Alem Matthees  4 , David Tuller  5 , Keith Geraghty  6 , Bruce Levin  7
Affiliations Expand

    PMID: 29562932 PMCID: PMC5863477 DOI: 10.1186/s40359-018-0218-3 

Abstract

Background: The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. However, the reported analyses did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence.

Methods: Here, we present results based on the original protocol-specified procedures. Data from a recent Freedom of Information request enabled us to closely approximate these procedures. We also evaluate the conclusions from the trial as a whole.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 07/09/2026
Thanks. I had assumed that the other thresholds would stay the same. Have Reform said they would increase the threshold at which people pay higher rate by the same amount as the personal allowance?
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 06/09/2026
Sorry if I’m being dim but can you explain why higher rate taxpayers would save 40%? If higher rate threshold stays the same, wouldn’t they save 20% of £2,430 too?
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 05/09/2026
Reminds me of Frank Furedi at University of Kent and the RCP/LM network – on steroids due to the prestige of Cambridge and billionaire funding @peterjukes.bsky.social
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 02/09/2026
Thank you for this. I would go further and suggest that the trial appears to have been designed to give “academic legitimacy to bogus quackery”. The flaws in this type of methodology have been pointed out so often, it’s hard to believe that the authors weren’t aware of issues.
By investigating a proprietary, fee-based intervention without incorporating objective biological markers, the trial risks lending academic legitimacy to bogus quackery. In other words, it is debatable whether a study of a treatment as implausible as LP is needed at all. However, if a trial were to be conducted, it would seem to be essential that it is rigorous with as little room for bias as possible. To be blunt: the new study is not going to advance our knowledge one iota.
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Reposted by Robert Saunders (aka McMullen)
ME/CFS Science @mecfsscience.org · 02/09/2026
1) Dr. Edzard Ernst, who often writes critically about alternative medicine and pseudoscience, has written a blog about this Lightning process trial for Long Covid.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 30/08/2026
Heartening to see that the obituary of Professor Jo Cambridge is currently the most viewed obituary in The Guardian.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 30/08/2026
Working in partnership with Jonathan Edwards at UCL, Jo Cambridge’s research revolutionised understanding and treatment of rheumatoid arthritis. Like Jonathan, she later turned her attention to investigating the mechanisms of ME/CFS. Her death is a great loss.
theguardian.com
Jo Cambridge obituary
Other lives: Professor whose research led to immunotherapies that have improved the lives of countless individuals
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ME/CFS Science @mecfsscience.org · 29/08/2026
1) New blog article: the hormone prolactin rises much higher in ME/CFS patients after taking buspirone than in controls. This is one of the most replicated findings in the field but for years this line of research was abandoned.
mecfsscience.org
Increased prolactin response to buspirone - ME/CFS Science
Multiple studies have found an increased response of the hormone prolactin to the drug buspironeContinue readingIncreased prolactin response to buspirone
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Reposted by Robert Saunders (aka McMullen)
Frances Ryan @francesryan.bsky.social · 03/08/2026
As Rod Liddle has died, I notice this column I wrote in 2019 about his attacks on people with M.E. is on the most read again. Rebekah Brooks, of News UK, described Liddle today as “provocative”. In reality, he spread lies about very sick people for cash. www.theguardian.com/commentisfre...
theguardian.com
Rod Liddle vilifies disabled people. I’m tired of the hate. We all should be | Frances Ryan
Whether it is ME patients or another target, huge swathes of the media have normalised hatred of minorities for years, says Guardian columnist Frances Ryan
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Naomi Whittingham @naomiwhitt.bsky.social · 30/07/2026
I realised there was a part of chronic illness that I'd never actually written about. Not the grief or the isolation. But the experience of living inside a body that feels so unpredictable and unsafe. Now I’ve written it. I’d love to know if it resonates with you.
alifehidden.com
The Burden of Chronic Illness That I Rarely Talk About
Being ill is hard.  What an obvious thing to say – and yet how often it goes unspoken.  I’ve written about many aspects of life with long-term illness: from the grief of dreams shat…
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Reposted by Robert Saunders (aka McMullen)
ME/CFS Science @mecfsscience.org · 21/07/2026
1) We wrote a new article on cell and tissue analysis using genetic data. For ME/CFS, the results strongly point to neurons. One of the top hits is the medium spiny neuron, located in a region deep inside the brain called the striatum.
mecfsscience.org
Cell and tissue enrichment in ME/CFS - ME/CFS Science
By matching DNA results with gene expression databases researchers can determine the tissues and cellContinue readingCell and tissue enrichment in ME/CFS
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Chris Ponting @cgatist.bsky.social · 01/07/2026
In April @ukbiobank.ac.uk stopped all researchers from accessing their Research Analysis Platform. In May they indicated they would “provide a more specific timetable in early June”. Until access is restored @decodemestudy.bsky.social analysis is stalled. We will keep all participants informed.
Email from UK Biobank which states that they expect to be able to provide a more specific timetable for re-opening their Research Analysis Platform "in early June".
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 18/06/2026
Maybe they read my letter in the Observer: observer.co.uk/opinion-and-...
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Reposted by Robert Saunders (aka McMullen)
Action for ME @actionforme.bsky.social · 10/06/2026
🧬 The recording from last month’s Sequence ME & Long Covid webinar is now available to watch on our YouTube channel 🔗 Watch the recording here: youtu.be/2PFdsYCfiJo
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ME/CFS Science @mecfsscience.org · 14/06/2026
1) Watched this presentation by Dr. Steve Gardner from PrecisionLife. Their genetic analysis suggests that ME/CFS is highly polygenic and heterogeneous. They are using their data to make drug repurposing trials more effective, for example on GLP-1 receptor agonists.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 14/06/2026
My letter in today’s Observer: “Many of us stopped using X after Musk’s intentions became clear. The time has long since passed for anyone who cares about truth, humanity and democracy to follow – particularly those who aspire to lead.”
Letter in The Observer, 14/06-26:

Wes Streeting is right to say that Elon Musk’s behaviour is a “threat to democracy” (“I don’t want Farage walking into No 10 on my conscience”, News, last week ). It is therefore confusing why he and so many others continue to use X, thus driving traffic to the toxic social media platform, which actively promotes division, hatred and misinformation.

Many of us stopped using X after Musk’s intentions became clear. The time has long since passed for anyone who cares about truth, humanity and democracy to follow – particularly those who aspire to lead.

Robert Saunders
Balcombe, West Sussex
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 10/06/2026
Trial By Error: The Truth According to Wired (and Alan Levinovitz): virology.ws/2026/06/09/t...
virology.ws
Trial By Error: The Truth According to Wired (and Alan Levinovitz) | Virology Blog
By David Tuller, DrPH Much has already been written about Alan Levinovitz’ 7,600-word love poem to the potential healing powers of so-called “mind-body” int ...
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David Tuller @davetuller1.bsky.social · 09/06/2026
My first post about that Wired piece: virology.ws/2026/06/09/t...
virology.ws
Trial By Error: The Truth According to Wired (and Alan Levinovitz) | Virology Blog
By David Tuller, DrPH Much has already been written about Alan Levinovitz’ 7,600-word love poem to the potential healing powers of so-called “mind-body” int ...
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 02/06/2026
I question the description of @sanders.senate.gov as a populist. He may be on the far left of US politics but the policies he advocates seem to be mostly consistent with those of social democratic parties in Europe, which I wouldn’t describe as populist.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 31/05/2026
It’s positive that you seem to getting more invitations to appear on the BBC these days. Do you know why that is? You seemed to be persona non grata for a while.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 30/05/2026
I think he expressed regret at how the title had been interpreted, and therefore wished he had chosen a different title which better represented the content of the book. But I may be misremembering.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 30/05/2026
Gosh, now I’ll have to try and find where I read it or heard him say it. Possibly an interview with Adam Rutherford? Or maybe in the anniversary edition of the book. Or maybe both.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 30/05/2026
I’ve not read the article yet or all of the comments here, so apologies if this is a repetition, but I’m fairly sure that Dawkins has expressed regret about the title TSG – despite the fact that it almost certainly contributed to the book’s commercial success.
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Jonathan Liew @jonathanliew.bsky.social · 28/05/2026
we see you www.theguardian.com/commentisfre...
theguardian.com
If you’re still on Elon Musk’s X, ask yourself this: why? | Jonathan Liew
Some argue that quitting the platform formerly known as Twitter cedes the space to malign actors. But it’s an open sewer, beyond redemption, says Guardian columnist Jonathan Liew
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ME/CFS Science @mecfsscience.org · 26/05/2026
1) There’s an interesting lead in the ME/CFS genetic data: the eccentric medium spiny neuron (eMSN), a cell type in the brain discovered only a couple of years ago. All based on preliminary findings, but the data looks rather interesting.
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Simon McGrath @simonmcg.bsky.social · 23/05/2026
Powerful poem about the medical mistreatment of ME/CFS patients, published by The Healing Muse. Written by my friend Veronica Ashenhurst, who has severe ME. Read the whole poem here: (@roberthmcmullen.bsky.social) www.s4me.info/threads/publ...
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 20/05/2026
www.theguardian.com/technology/2...
theguardian.com
Leave big tech behind! How to replace Amazon, Google, X, Meta, Apple – and more
A handful of companies monopolise the web, with unprecedented access to our data. But there are many more ethical – and often distinctively European – alternatives
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 14/05/2026
The house he claims his partner bought in Finton-on-Sea was reported to have cost £885,000, so I’m assuming this is a different house but I may be wrong.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 14/05/2026
This is clearly relevant as it would expose another Farage lie. But in some ways what he did with the £5 million is irrelevant. The important question is whether the money influenced his decision to stand as an MP or any policy decisions.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 14/05/2026
On reflection I think I was wrong to draw the analogy with Brexit negotiations, as the EU had no incentive to offer us a favourable deal for leaving before the referendum, but I think my main point is valid.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 14/05/2026
My letter in the Observer in response to an article by @tombaldwin66.bsky.social on rejoining the EU: observer.co.uk/opinion-and-...
observer.co.uk
A one-day debate could revive assisted dying bill
What is the way ahead for the assisted dying bill? (“MPs seek to revive assisted dying bill in face of Lords filibustering”, 26 April). The simple route is to await the ballot for private members b...
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