iiinova — where your digital self keeps evolving

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.

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.

01911

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.

011

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.

050

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

050

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 12/05/2026

Never vote for someone who tucks their napkin into the collar or their shirt.

020

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 25/02/2026

When @davetuller1.bsky.social asked Professor Jonathan Edwards if he could explain the BACME dysregulation model of ME/CFS. Full interview: youtu.be/jklUXc1XCYI Open letter to BACME: www.s4me.info/threads/an-o...

054

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 18/02/2026

An Open Letter to British Association for Clinicians in ME/CFS (BACME) in Response to the Document ‘Guide to Therapy’, 2025. www.s4me.info/threads/an-o... Letter authors: Jonathan Edwards (professor of connective tissue) Michelle Bull (physiotherapist) Joan Crawford (psychologist):

Summary

The document represents a failure to move forward to an evidence-based approach to an illness that is recognised as being long term for many people and, at present, of unknown mechanism. It appears to serve interests of BACME members rather than patients and from our perspective involves a deception that can only perpetuate the lack of trust ME/CFS patients have in the healthcare system. Until now policy has been unclear. This document makes it plain that nothing with any evidence base is on offer and that there is no justification for continuing to commission services based on the proposed model.

With limited resources, we believe the focus must be on medical care of severe and very severe cases, including nutrition and other life support, to reduce unnecessary deaths. The lack of a specialist medical 'home' with a research base has halted progress in knowledge and care in ME/CFS. This neglect cannot continue to be tolerated. Continuing current provision without medical leadership will not result in improved outcomes for patients. Filling the vacuum with well-intentioned, but ineffective 'therapies' is a poor use of resources and therapists’ time.

41512

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 06/11/2025

Refreshingly progressive letter in today’s Times: www.thetimes.com/comment/lett...

Sir, No one likes paying more tax. My heart sank when I got my first tax estimate after moving to Denmark, a regular in the top three of highest-taxed nations. But now I think about how easy it is to get a doctor’s appointment, about the highly subsidised childcare, the fact that students get paid to go to university or college, the near-total absence of potholes, the excellent cycle paths, the army of gardeners that tend public spaces, the day-trip-worthy libraries, the generous state pension, the entirely publicly funded nursing homes… And I ask myself not whether Danes pay too much tax, but whether Britons pay enough?
David Reay
Sonderborg, Denmark

030

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 10/10/2025

A rare October wheelchair outing yesterday. Wakehust was magical in the autumn sunshine.

160

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 13/09/2025

The big issue of the day: fewer or less than half of children? www.thetimes.com/comment/colu... @susiedent.com please can you adjudicate?

$Let’s be natural when it comes to fewer versus less This is contested territory — it certainly seems to rile some of our readers Rob Nash Friday September 12 2025, 7.52pm, The Times Fewer than half of Feedback readers spend less than 20 minutes a day thinking about grammar. Or perhaps I mean: less than half of readers spend fewer than 20 minutes a day thinking about grammar. The first version is preferable, to my mind. But not to everyone’s. Our style guide says: “The thing being measured is singular (time, space) even if the units (years, miles) are plural.” Fewer, on the other hand, is used “generally with plural nouns”. Feedback readers are definitely a plural (even in a bad week), so it’s fewer. QED, surely. QEDon’t, reckoned Robert Saunders of West Sussex, who was “shocked to read that ‘Fewer than half of UK children under 15 help with household chores’. What is the world coming to? It is less than half, not fewer.” Bernard Hughes was likewise “disturbed by the headline. ‘Fewer than half’ is surely an example of hypercorrection. ‘Less than half’ is much more natural and I think would have been universally used till people started worrying about it seeming wrong. ‘Half’ is an amount, not a number. Will you come out against this nonsense?” This is contested territory, and it seems to me in the case of our headline that there are three questions. First, is less/fewer referring to the size of the fraction or the number of children? The latter, in my view. Second, even if the latter, would it still be preferable to use less? Not to my ear. Third, can one not choose whichever one thinks sounds better? I suppose so. As the Times style guide concludes: “This is an area where prescriptive zeal should not trump common sense and an ear for what sounds natural and right; so that’s one less thing to worry about.”$

010

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 15/08/2025

Prof Chris Ponting, lead author of DecodeME: “It is clear that ME is not a research priority for this UK government ... We have to asked the question of them: Why is ME not a priority when all these other diseases have been and are?“ Why is that @rthonwesstreeting.bsky.social?

1104

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 09/08/2025

Prof Jonathan Edwards’s response to Andrew Millar’s letter: www.s4me.info/threads/deco...

"The finding of clusters of genes associated with ME does not prove they are part of a disease pathway"

Wrong.
They must be, because they are by definition antecedents.
Which genes and what they do is another matter but this guy is from the age of diplodocus.
The fact that histopathology precedes genetics is no more relevant than pigeon post preceding WIFI.

He is only talking to himself. But he may confuse others.

0131

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 09/08/2025

My letter in The Times about #DecodeME and the need for the government, institutions and individuals to acknowledge their mistakes, apologise, and act to ensure that research is sharply increased and patients are given access to appropriate services: www.thetimes.com/comment/lett...

Sir, As someone who has been severely disabled by ME for more than 30 years, I was delighted to read about the results of DecodeME. However, Chris Ponting is right to express anger that this type of genetic analysis was not done 15 years ago. As you reported (News, Jul 22), after a three-year delay, the Department of Health and Social Care has published its dismal delivery plan for ME, but it included no commitment to funding and no pathway to providing adequate services. For decades, governments have told us they are committed to helping people with ME, but all the evidence suggests the opposite.
DecodeME has given me and millions of others hope. The time has long since passed for the government, funding bodies, medical institutions and individuals to acknowledge their mistakes, apologise to patients, and act to ensure that quality scientific research is sharply increased and patients are given access to appropriate physician-led services.
Robert Saunders
Balcombe, W Sussex

712629

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 07/08/2025

Strange that #DecodeME was on the front page of the Guardian today and was reported in all the major UK newspapers but it hasn’t yet been mentioned on BBC News: www.theguardian.com/society/2025...

Imagine of the front page of the Guardian with a report on DecodeME.

033

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 07/06/2025

3/ Shortly after I took this video she did a poo and flew back to her mum who had been calling to her from the trees 😊 Such a privilege the hold this beautiful creature. So soft and delicate. I hope I didn’t do anything wrong but happy to be advised.

031

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 07/06/2025

1/ At first I thought this fledgling might be dead but when I started stroking her I could see that she was moving. I was going to put her in a shoe box and ask @rspb.bsky.social what I should do…

111

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 28/05/2025

Edwards et al give short shrift to rehabilitation programs for people with ME/CFS which encourage physical exertion: “It is now clear that this approach not only has no valid theoretical basis but produces no useful benefit and often leaves patients more unwell.”

Until recently, treatment for ME/CFS has tended to focus on rehabilitative programs that encourage patients to undertake physical exertion of the sort that triggers symptoms. It is now clear that this approach not only has no valid theoretical basis but produces no useful benefit and often leaves patients more unwell[16][64]. If activity triggers non-specific immune signals that fuel further macrophage-T cell interaction, this is hardly surprising.

052

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 20/05/2025

If the statistic is correct, Kurt Vonnegut would have averaged less than 30 semicolons a novel, not fewer.

010

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 18/05/2025

My letter in the Sunday Times on the cruelty and despair of claiming incapacity benefits with severe ME/CFS: www.thetimes.com/article/7ca7... Written in response to this article by @eddavey.libdems.org.uk: www.thetimes.com/uk/politics/... Archive copy: archive.ph/YSEuk

Motability scheme

As someone who has suffered from severe ME/CFS for more than 30 years, I can relate to Sir Ed Davey’s feelings of betrayal in having to list all the things his son can’t do when applying for the Motability scheme (news review, May 11). Because my condition was not classified as permanent, in the first ten years I was unwell I had to complete two long forms every six months to receive sickness and disability benefits. It is hard to convey the depths of despair I felt in having to use so much of my limited capacity to detail every thing I was unable to do, over and over again. As political rhetoric against people on disability benefits increases, I await another assessment with a familiar sense of dread.

Robert Saunders
Balcombe, W Sussex

24518

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 14/05/2025

“It is noteworthy that this anachronistic fantasy view has been commissioned by the BMJ - the journal of the British Medical Establishment.”Professor Jonathan Edwards, writing on the S4ME forum: www.s4me.info/threads/pati...

0395

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 12/03/2025

When asked by @eddavey.libdems.org.uk, the PM refuses to rule out benefit cuts to people who are not well enough to work. This could affect many people with ME/CFS who have been institutionally mistreated for decades.

021

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 01/02/2025

It’s 19 years since I had this letter about ME/CFS published in The Times. Some progress has been made since then but it is frustrating how little has changed: same rhetoric, same lack of investment in research, still no effective treatments, even worse services, same daily struggles.

181

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 21/01/2025

My letter in the Guardian on Elon Musk’s fascist-style salute: www.theguardian.com/us-news/2025... Fitting to have it published on day I posted on X for the last time under Musk’s ownership.

120

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 11/01/2025

My letter in today’s Times on economic growth, happiness and climate change: www.thetimes.com/article/4311...

Interpretations of economic growth

Sir, James Sproule claims that economic growth will make us all happier (letter, Jan 10). However, his research, like Arthur Okun’s misery index, appears to be a measure of economic health (factors that they “considered might make people miserable”) rather than a measurement of happiness per se. Setting aside familiar objections to utilitarianism, it should be noted that with rising wealth inequality it is possible for the economy to grow while most people become poorer, which is unlikely to make most people happier, let alone everybody.

Moreover, the research to which Daniel Finkelstein (“Starmer, take note: money makes us happier”, Jan 8) and Mr Sproule refer appears to overlook the effects of economic growth on climate change and the environment. The priority that has been given to GDP is not only a risk to long-term human happiness but to the survival of our species.

Robert Saunders

Balcombe, W Sussex

061

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 18/12/2024

Interesting development: hbprojecttalk.wordpress.com/2024/12/18/b...

Project Talk Page
12/18/2024

Brief message

Many of you will have seen Cochrane’s recent communication about the review on ME/CFS and exercise. We regret their decision to reject our advice, and are discussing next steps.

On behalf of the Independent Advisory Group

0120

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 09/12/2024

Jonathan Edwards has responded to reviews of his article on The Concept of ME/CFS. Click on the comment link below each review to read his responses: www.qeios.com/read/NXCXM1#... His response to Dr Raijmakers on bias of patient-initiated research is particularly welcome:

My view on bias is that patients are less likely to introduce bias than academics. Patients have a single interest – finding out the mechanism of their illness and how to treat it – not a conflict of interest. In contrast, academics have conflicting interests in personal advancement through publications, grants, fees from insurance companies, promotion with salary enhancements, honours from royalty and goodness knows what! Patients may make unwise decisions about backing research through ignorance of biology but that is a different issue (and academics do that too).

Moreover, we now have an international community of hundreds of patients and researchers talking together on the Science for ME website with many patients being highly skilled in biological disciplines and in creative sceptical scientific thinking. Personal interests can intrude in any context and do sometimes they emerge. I am aware of patients obtaining financial benefits from promoting certain types of treatment. But across the board I see no new risk of bias in patient-led research. Moreover, the bias in academic led research has been hard to compete with. When I first took an interest in ME/CFS I was horrified not only by the poor quality of methodology in studies but also by the vilification of critical patients by the academics producing studies that deserved that criticism. Coming from a different branch of medicine it came as a shock, and over the last ten years I have come to see things were even worse than I thought. Dismissal of patients’ contribution to the science in the past has been disgracefully disingenuous.

1176

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 30/11/2024

Dreadful article in The Daily Telegraph about that misleading BMJ paper on Long Covid: “Long Covid can only be cured with therapy, study suggests” The Telegraph’s false claims aren’t even supported by the BMJ’s paper’s false claims. Post-truth medicine and journalism at its worst.

“The effectiveness of CBT and rehabilitation implies that long Covid is not real but psychological”

Long Covid can only be cured with therapy, study suggests

Researchers ‘find no compelling evidence’ that drugs, dietary supplements or oxygen treatments improve symptoms

Michael Searles
Health Correspondent
28 November 2024 6:57am GMT

Long Covid can only be successfully treated with therapy, a Canadian study suggests.
The biggest analysis of data yet looked at 24 separate trials and concluded that talking therapies and physical and mental rehabilitation “probably improve symptoms” .
The researchers said that “no compelling evidence supported the effectiveness” of other treatments including certain drugs, dietary supplements or oxygen therapy.
In a separate study, Dr John Gerrard, the chief health officer in Queensland, Australia, called into question the existence of long Covid, suggesting the post-viral syndrome people may be experiencing is no different to that after flu or other illnesses.
Researchers led by the McMaster University in Ontario, pooled data from trials involving 3,695 patients.
They said the current guidance on treating long Covid was “limited” and based on consensus among medics rather than systematic reviews of data.
The authors said the evidence “suggests that a programme of cognitive behavioural therapy (CBT) probably reduces fatigue and improves cognitive function in patients with long Covid, and a programme of physical and mental health rehabilitation probably increases the proportion of patients who experience recovery or important improvements”.
But they noted that psychological intervention required patient involvement and “may be challenging owing to some patient groups expressing concerns about the safety and efficacy of these approaches and that the effectiveness of CBT and rehabilitation implies that long Covid is not ‘real’ but ‘psychological’.”

Dr Daniel Munblit, from the division of care in long-term conditions at King’s College London and the department of infectious disease at Imperial College London, said the research “under…

3133

Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 25/11/2024

A poem I wrote for a Ukrainian friend who is a guest in our village. She has a life-threatening autoimmune disease and her husband was conscripted to fight on the front line. I was touched and honoured when she sent me her Ukrainian translation.

І все ж я літаю

My wings are made of dappled dreams
Of hope and love and mountain streams
Upon a summer day to share
The panoply of nature’s fair

My wings are clipped
And yet I fly
And yet I fly
Prostrate gazing at the sky
Like the falcon soaring high
That gravity cannot defy
I dream of all that once I knew
And all that may yet still come true

Though as I float amid the blue
I hear an old refrain anew
The hardest part is not the flight
But learning how to soft alight

Robert Saunders 2024

And yet I fly

Мої крила ткані зі строкатих мрій,
потоків гірських, сонцесяйних надій,
з любові й благовісту літнього дня -
збираю невтомно скарбничку буття.

Мої крила зранені лезами по краю.
І все ж я літаю,
І все ж я літаю,
Розправлені широко знов відчуваю.
Задимленим поглядом ранок вітаю.
Як сокіл високо у небі витаю.
І сила тяжіння не може тримати,
бо вірю і мрію - я вмію літати.

Між хмари пірнаю в безкраю блакить.
Задавнений приспів у серці щемить.
Найважче — не сей соколиний політ,
а світлом мʼяким запалити мій світ.

221