#alan-carson — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #alan-carson, aggregated by home.social.
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News Bits–“Frail & Furious” for #Millions Missing; Usual Suspects at Psych Confab; Long COVID Advocates Channel ACT UP
By David Tuller, DrPH *This is a crowdfunding month at UC Berkeley. If you’d like to support my work, the link is here. ********** “Frail and Furious” on May 12th Each year on May 12th, an international day of ME awareness, #MillionsMissing protests are held in cities across the world and draw significant media attention. This month’s #MillionsMissing campaign has the tagline “Frail & Furious,” according to the page for the event on #MEAction’s site. The organization launched the campaign ten years ago. Why specifically “frail”? (“Furious” is easy to understand.) Here’s why, per #MEAction: “In the U.S., new Medicaid rules will force people with ME and Long COVID to work 80 hours per month or lose their government health insurance, unless they can prove they have a “serious or complex medical condition” in order to get a “medically frail” exemption. “We know that both are true for the majority of our community but, once again, we are having to fight to prove this to our health leaders. When ME is overlooked, people are denied the protections, services, and support that medically frail patients are supposed to receive.” Here’s some more information from the site: “Government and healthcare systems around the world fail to classify myalgic encephalomyelitis (ME) as a serious, complex medical condition, leading to significant neglect in medical care and social services. Diagnoses are often delayed for years, disability qualifications are complicated, and our health care is at risk. ME receives far less funding for research relative to disease burden (only 3-7% of comparable illnesses), despite massive economic costs. Over and over again, people with ME and Long COVID are asked to prove their medical frailty – how sick we really are. “This #MillionsMissing, we are Frail and Furious! This May, we will come together to show the world how devastating this … -
DecodeME Pre-Print Reports Eight “Genetic Signals” Related to Immune Function and Nervous System
By David Tuller, DrPH
People with ME/CFS differ genetically from the general population, according to the long-awaited results of the largest biological study of the disease to date. By comparing DNA samples from more than 15,000 patients with ME/CFS diagnoses to samples from those who were not diagnosed, the investigators identified eight “genetic signals,” including ones relating to immune function after infection and to nervous system.
The results of the study, called DecodeME, were released by the University of Edinburgh yesterday in a pre-print version that has not yet been peer-reviewed. The findings immediately provided a jolt of hope among patients and advocates involved with ME/CFS. The mood represented a shift since July 22nd, when the UK government released an ME/CFS “Delivery Plan” that that was widely panned as merely a skeleton of a plan with little meat–or funding.
DecodeME launched a few years ago with a major outreach effort to encourage the submission of saliva samples. Large segments of the ME/CFS patient and advocacy communities strongly backed the project and have been eagerly anticipating the release of the findings.
The pre-print results received widespread coverage in the UK. Articles appeared in The Guardian, Financial Times, on the BBC, and elsewhere. Here’s Professor Chris Ponting, a geneticist at the University of Edinburgh and the study’s lead investigator, on the potential significance of the set of genetic markers identified, as quoted in Financial Times:
“These [genetic] signals align with how people with ME/CFS describe their illness…Highly targeted studies are now needed to understand why each of these eight signals is linked with ME/CFS so that we can move towards future diagnostics and treatments. It is a forgotten and forsaken disease that should have had a genetic study like this 15 years ago.”
The UK’s Medical Research Council (MRC) provided £3.2 million for DecodeME. In making the decision, perhaps some smart people at the MRC understood that it was a waste to spend, along with other government funders, £5 million on the the PACE trial boondoggle—a pet project of leading psychiatrists and others with an apparently limited understanding of appropriate and ethical approaches to conducting studies and reporting results. PACE purported to prove that cognitive behavior therapy and graded exercise therapy were curative treatments for ME/CFS. In reality, the reported results were fraudulent.
With Decode ME, some caveats are definitely in order. First and foremost, this work has not yet been vetted through the standard processes of scientific publishing. The peer-reviewed and published version is bound to differ from the pre-print in major or minor ways.
Second, findings like these offer clues to pursue further, not definitive answers. They will not lead directly to treatments. The results, if sustained, will hopefully trigger intensive efforts to examine the biological mechanisms influenced by these genetic markers and ways and identify targets of intervention with medication.
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Science Media Centre Weighs In
Not surprisingly, the so-called Science Media Centre in London, a stronghold of support for the biopsychosocial approach to complex conditions like ME/CFS, gave Professor Alan Carson an opportunity to vent some spleen.
Professor Carson is a neuropsychiatrist at the University of Edinburgh, an expert on functional neurological disorder, and a die-hard member of the biopsychosocial ideological brigades. In his comment, he refers to the illness as CFS/ME. This nomenclature fetish is widespread among Professor Carson’s ideological travellers. It is unclear why they feel the need to persist in this petulant form of resistance. Every time these folks use the phrase “CFS/ME,” it’s like they’re stamping their little feet in protest at how science is passing them by. It’s kind of sad.
In his comment, Professor Carson huffed something more or less along these lines: The findings most likely represent statistical noise due to uncertainties about the patient population; or if they don’t represent statistical noise, they’re meaningless because we’ve known for years that “CFS/ME” might have a genetic component; or if they’re not meaningless, they’re at least very modest, and similar genetic markers identified in other diseases haven’t led to tangible progress; or even if they might lead to some modest advance, any such development is aeons in the future.
Professor Carson’s smug tone speaks for itself. No one should take anything he says at face value.
Luckily, the SMC also invited two less biased observers to comment. This balance is certainly an improvement. Years ago they might have invited, in addition to Professor Carson, mostly other biopsychosocial stalwarts. In this case, the other commenters offered positive assessments of the findings while also making appropriate cautionary points about the limitations.
Said Alena Pance, Senior Lecturer in Genetics, University of Hertfordshire:
“This study identifies some key potential areas for future study. It lays the groundwork for other researchers and pharmaceutical companies to follow, by identifying the areas to look at both for understanding the causes of ME/CFS and for developing new drugs to treat it.”
And Jackie Cliff, Senior Lecturer, Brunel University of London, said:
“It is very interesting to me, as an immunologist, to see that genes involved in the immune response have been identified: this will guide us to understand better the role of infection and the mechanism of disease-susceptibility…This study should stimulate vigorous research in the ME/CFS area.”
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Edinburgh Study Links ME/CFS to “Blood-Based Biomarkers”
By David Tuller, DrPH
Last fall, a team from the University of Edinburgh released a pre-print called “Replicated blood-based biomarkers for myalgic encephalomyelitis not explicable by inactivity.” At the time, I posted an interview with the lead investigator, Chris Ponting, a professor of genetics at the university.
The peer-reviewed version of the study has just been published by the journal EMBO Molecular Medicine. According to a press release from the University of Edinburgh, “The largest ever biological study of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) has identified consistent blood differences associated with chronic inflammation, insulin resistance, and liver disease.” The work involved collaboration between the university’s Institute of Genetics and Cancer and the Schools of Mathematics and Informatics.
The paper has received significant media coverage, including a report in The Times. A BBC article featured the following crisp summary of the implications of the research: “Prof Chris Ponting said: ‘For so long people with ME/CFS have been told it’s all in their head. It’s not. We see it in their blood.’”
The study is a complicated read for non-scientists. In short, the investigators examined levels of more than 3,000 blood-based molecular and cellular traits from a huge healthcare database repository called the UK Biobank. These biobank data were for more than 1400 people who reported having received an ME/CFS diagnosis and more than 130,000 people who did not. The analysis identified 116 traits that were significant among both female and male ME/CFS patients. Some of the findings were replicated in a separate, smaller dataset.
Furthermore, the investigators found that the results were not associated with reported levels of activity. This finding serves to undermine the long-standing theory that deconditioning is a major cause of the symptoms in ME/CFS. That theory, of course, formed the basis of the psycho-behavioral treatment approach embodied in the fraudulent PACE trial’s interventions–graded exercise therapy (GET) and a specialized form of cognitive behavior therapy (CBT).
Per the study: “Evidence of a large number of replicated and diverse blood biomarkers that differentiate between ME/CFS cases and controls should dispel any lingering perception it is caused by deconditioning and exercise intolerance.”
Although the study revealed population-level differences in the biomarkers between cases and controls, the investigators stressed that these biomarkers cannot currently be used to distinguish individuals with ME/CFS from those who don’t have it. However, they stressed the importance of expanding on their investigation, noting that the findings should help to “accelerate research into the minimum panel of blood traits required to accurately diagnose ME/CFS in real-world populations.”
The UK’s Science Media Centre, which has a long history of endorsing the discredited claims of the GET/CBT ideological brigades and whose former head compared critics of the PACE trial to Nazis, responded by posting two expert comments. One was from Alan Carson, a professor of neurology at the University of Edinburgh, a PACE truther, and a leader in the field of functional neurological disorder (FND). (Professor Carson blocked me on then-Twitter long ago because I criticized unwarranted claims from him and others about research into FND prevalence, diagnosis, and treatment.)
In his comment, with its snide and snippy tone, Professor Carson comes across as somewhat aggrieved. That wouldn’t matter much if he were right on the facts. But he is wrong. His main complaint is that, since the study investigated more than 3,000 traits, it “is not very exciting” that 116 would appear to be significant; that would happen by chance alone, he claims. This is false. Oops!
When a study involves a large number of tests, standard practice is to use specific statistical methods to reduce the likelihood of positive results arising by chance. Professor Carson apparently did not recognize or understand that the investigators took such steps to correct for the number of tests they conducted. His comment can be dismissed outright on the grounds of cluelessness. It is disturbing that the SMC has not acknowledged this indisputable error.
Luckily, the other expert—Professor Kevin McConway, an emeritus professor of applied statistics at the Open University–offered an extensive, thoughtful, and cautiously positive review of the study. As he noted:
“I think this is an important piece of research, but it’s also important to be careful not to claim too much from its findings. There’s a lot more to do.
“The press release and the research paper both make it clear that these findings could help in finding a set of blood biomarkers that can reasonably reliably distinguish people with ME/CFS from those who do not have that condition, but that, without a lot of further work, the findings do not in themselves provide such a set of biomarkers.”