Robert Saunders (aka McMullen)
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roberthmcmullen.bsky.social
Robert Saunders (aka McMullen)
@roberthmcmullen.bsky.social
410 followers 260 following 220 posts
Author of "stranger and stranger”, letter writer, advocate and fundraiser for biomedical ME/CFS research.
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roberthmcmullen.bsky.social
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
November 6, 2025 at 1:19 PM
roberthmcmullen.bsky.social
A rare October wheelchair outing yesterday. Wakehust was magical in the autumn sunshine.
October 10, 2025 at 12:40 PM
roberthmcmullen.bsky.social
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.”
September 13, 2025 at 3:08 PM
roberthmcmullen.bsky.social
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?
August 15, 2025 at 12:53 AM
roberthmcmullen.bsky.social
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.
August 9, 2025 at 10:39 AM
roberthmcmullen.bsky.social
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
August 9, 2025 at 9:41 AM
roberthmcmullen.bsky.social
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.
August 7, 2025 at 4:58 PM
roberthmcmullen.bsky.social
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.
June 7, 2025 at 5:34 PM
roberthmcmullen.bsky.social
2/ But she soon started to perk up.
June 7, 2025 at 5:34 PM
roberthmcmullen.bsky.social
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…
June 7, 2025 at 5:34 PM
roberthmcmullen.bsky.social
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.
May 28, 2025 at 12:28 AM
roberthmcmullen.bsky.social
If the statistic is correct, Kurt Vonnegut would have averaged less than 30 semicolons a novel, not fewer.
May 20, 2025 at 8:28 PM
roberthmcmullen.bsky.social
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​
May 17, 2025 at 11:55 PM
roberthmcmullen.bsky.social
“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...
May 14, 2025 at 5:29 PM
roberthmcmullen.bsky.social
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.
March 12, 2025 at 2:34 PM
roberthmcmullen.bsky.social
Snap
March 2, 2025 at 6:27 PM
roberthmcmullen.bsky.social
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.
February 1, 2025 at 5:00 PM
roberthmcmullen.bsky.social
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.
January 21, 2025 at 6:34 PM
roberthmcmullen.bsky.social
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
January 11, 2025 at 4:16 PM
roberthmcmullen.bsky.social
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
December 18, 2024 at 3:04 AM
roberthmcmullen.bsky.social
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.
December 9, 2024 at 12:42 AM
roberthmcmullen.bsky.social
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…
November 30, 2024 at 1:48 PM
roberthmcmullen.bsky.social
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.
November 25, 2024 at 5:35 PM