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Robert Saunders (aka McMullen)

@roberthmcmullen.bsky.social
469 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)
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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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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Reposted by Robert Saunders (aka McMullen)
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
“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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Reposted by Robert Saunders (aka McMullen)
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
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.
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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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Reposted by Robert Saunders (aka McMullen)
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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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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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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Reposted by Robert Saunders (aka McMullen)
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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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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Reposted by Robert Saunders (aka McMullen)
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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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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Reposted by Robert Saunders (aka McMullen)
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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Reposted by Robert Saunders (aka McMullen)
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 · 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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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 13/05/2026
An excellent blog by @simonmcg.bsky.social which explains what the £4.75 million that the UK government has given to Sequence ME and Long Covid will be used to do: mecfsresearchreview.me/2026/05/12/d... You can donate to the study here: www.actionforme.org.uk/research-cam...
mecfsresearchreview.me
DNA sequencing study to help pinpoint biology of ME gets £4.7m
The UK government has given nearly £5 million to fund full sequencing of the DNA of 6,000 people with ME using the best available technology. This will help scientists home in on what is really dri…
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 12/05/2026
“People with ME and ME-like symptoms have been neglected for decades and while this funding is very much welcomed, it is nowhere near enough to bring ME research on a par with other illnesses.” Sonya Chowdhury, CEO AfME 👏 www.thetimes.com/uk/healthcar... Witbout paywall: archive.ph/Czvwc
thetimes.com
Landmark ME study will map patients’ DNA in mission to find cure
The government will provide £4.75 million in funding to British scientists who aim to create a test to reliably identify chronic fatigue syndrome
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Action for ME @actionforme.bsky.social · 12/05/2026
👉 Read more about the announcement on our website www.actionforme.org.uk/major-fundin...
actionforme.org.uk
Major funding secured for Sequence ME & Long Covid, a DecodeMe project
We are thrilled to announce that our landmark research study, Sequence ME & Long Covid, has received major funding (£4.75m) from the UK government, signalling a transformative...
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 04/05/2026
So far I’ve raised £375 for Sequence ME and Long Covid. If anyone would like to help me reach my target of £500 I would be most appreciative: www.justgiving.com/page/robafme
justgiving.com
Rob’s birthday fundraiser for Sequence ME & Long Covid
Help Robert Saunders raise money to support Action for M.E.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 30/04/2026
Since 2013 I’ve raised £20,000+ for ME research charities. This year I’m raising money for Sequence ME & Long Covid as I think this is our best chance of understanding the causes and mechanisms of ME/CFS, which will lead to the development of effective treatments: www.justgiving.com/page/robafme
justgiving.com
Rob’s birthday fundraiser for Sequence ME & Long Covid
Help Robert Saunders raise money to support Action for M.E.
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John Peters @johnthejack.bsky.social · 30/04/2026
Letter in Times today from @jwatsononeill.bsky.social
Text:

Welfare state abuse
Sir, The perception that the welfare system is “too easy to access” is at odds with reality (“Majority of voters say welfare system is too easy to abuse”, Apr 28). Half of disabled people with complex needs assessed for benefits said they found the process humiliating, with many people receiving information in formats they could not access and being forced to complete futile reassessments. One in four people are disabled by barriers in society, and this number is growing, so we should be working together to respond to this, not demonising those applying for support they are entitled to.

Benefits are a lifeline and there is a great deal to address in our broken welfare system, from serious delays to chronic underfunding. Misuse in the system is scarce, and calling for an “emergency handbrake” on claims is a distraction from the real problems at hand, including government proposals to cut benefits further.
James Watson-O’Neill
Chief executive, Sense
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Reposted by Robert Saunders (aka McMullen)
ME/CFS Science @mecfsscience.org · 30/04/2026
1) 🇪🇺 The controversial European project on Long Covid includes a randomized trial on amygdala retraining and online CBT. In a preliminary analysis, both fared no better than usual care.
Screenshot of the study protocol: "Effectiveness of mindfulness-based online therapy or internet-delivered cognitive behavioral therapy compared with treatment as usual among patients with persistent somatic symptoms: Protocol for a randomized controlled trial."
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 22/04/2026
For my birthday on 3 May I’m raising money for Sequence ME & Long Covid via @actionforme.bsky.social: www.justgiving.com/page/robafme All donations gratefully received, however small or large. Thanks.
justgiving.com
Rob’s birthday fundraiser for Sequence ME & Long Covid
Help Robert Saunders raise money to support Action for M.E.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 22/04/2026
For my birthday on 3 May I’m raising money for Sequence ME & Long Covid via @actionforme.bsky.social: www.justgiving.com/page/robafme All donations gratefully received, however small or large. Thanks.
justgiving.com
Rob’s birthday fundraiser for Sequence ME & Long Covid
Help Robert Saunders raise money to support Action for M.E.
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Reposted by Robert Saunders (aka McMullen)
Action for ME @actionforme.bsky.social · 20/04/2026
1/6 🚨 ME on the BBC We are delighted to have been selected for a BBC Lifeline Appeal - a unique opportunity to increase understanding of ME and share the voices of the ME community across national TV! #pwME ⬇️
Poster showing a video camera on a tripod with text “BBC Lifeline Appeal – Airing Sunday 26 April.” The Action for ME logo appears in the top right, and a Lifeline logo with two reaching hands is at the bottom.
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David Tuller @davetuller1.bsky.social · 20/04/2026
Well, it's now up to 27% of the goal, with 186 donations. So, it's moving along a bit. Thanks to all!!--https://crowdfund.berkeley.edu/project/49720
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Simon McGrath @simonmcg.bsky.social · 15/04/2026
Blog about the recent study finding evidence across Europe for ME/CFS peaking at two different ages, a v unusual feature. The peak ages of 1about 6 and late 30s is a unique combo even among diseases with two, and could be a clue to the biology of ME/CFS. mecfsresearchreview.me/2026/04/15/m...
mecfsresearchreview.me
ME/CFS onset had two peaks, which may be a clue to causes
A new study strengthens the findings that ME/CFS is a disease with a highly unusual feature. Analysis of survey data on patients across Europe found there are two peak ages for getting ME/CFS, arou…
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Frances Ryan @francesryan.bsky.social · 02/04/2026
“Ministers justify cutting help for people too disabled to work by arguing it will remove the “perverse incentives” for benefits, as if a 25 year old bedbound with ME just needs incentivising to get back to the office.” My col. on next week’s Universal Credit cut www.theguardian.com/commentisfre...
theguardian.com
Next week’s disability cuts will make people destitute – and you might not understand how bad they are until it’s too late | Frances Ryan
If new claimants don’t meet strict criteria, they’ll lose half of the health element of universal credit. Don’t ignore that: in life’s lottery, that could easily be you, says Guardian columnist France...
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Peter Stefanovic @peterstefanovic.bsky.social · 06/04/2026
“Ministers justified reducing support for people too disabled or ill to work by arguing it would remove the “perverse incentives” that discourage employment… as if a twentysomething bedbound with ME just needs “incentivising” to get back to the building site” www.theguardian.com/commentisfre...
theguardian.com
Next week’s disability cuts will make people destitute – and you might not understand how bad they are until it’s too late | Frances Ryan
If new claimants don’t meet strict criteria, they’ll lose half of the health element of universal credit. Don’t ignore that: in life’s lottery, that could easily be you, says Guardian columnist France...
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ME/CFS Science @mecfsscience.org · 21/03/2026
1) 🔬🦠New article: we've made a comprehensive overview of the immune system in ME/CFS, analyzing major studies of the past 40 years. A longread with separate chapters on: - viral persistence - cytokines - neuroinflammation - antibodies - immune cells such as NK, B, and T cells
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Simon McGrath @simonmcg.bsky.social · 21/03/2026
Patients were central to the team that found ME/CFS is most likely to start in the teens and early middle age. Two age peaks is unusual for any disease and might help unravel ME's causes. academic.oup.com/ooim/advance... 1/ team credits to follow
academic.oup.com
Incidence age is bimodal for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, with higher severity burden for early onset disease
Abstract. Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS), is a disease of uncertain origin. Studies of Norwegian health records have sugge
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Adam @abrokenbattery.bsky.social · 19/01/2026
My #MECFS scandal explainer video has just passed 200,000 views. Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since. medium.com/@abrokenbatt...
medium.com
ME/CFS Scandal Follow up
The ME/CFS scandal goes much deeper than my 27-minute explainer video. That was just an introduction — how for decades patients were told…
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Adam @abrokenbattery.bsky.social · 05/03/2026
Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention. Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 26/02/2026
Jonathan Edwards and other members of @scienceforme.bsky.social are drafting a document on what we want in terms of service provision for ME/CFS. Latest draft here: www.s4me.info/threads/a-th... All welcome to comment and make suggestions before the document before it is finalised.
s4me.info
A thread on what people with ME/CFS need in the way of service
I don't think trying to gather lots of signatories would be a good idea here. there are too many competing political interests. At this stage I am not sure that a signed letter is the way to go in fac...
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 26/02/2026
Jonathan Edwards and other members of @scienceforme.bsky.social are drafting a document on what we want in terms of service provision for ME/CFS. Latest draft here: www.s4me.info/threads/a-th... All welcome to comment and make suggestions before the document before it is finalised.
s4me.info
A thread on what people with ME/CFS need in the way of service
I don't think trying to gather lots of signatories would be a good idea here. there are too many competing political interests. At this stage I am not sure that a signed letter is the way to go in fac...
21713