From David Tuller @david
I spoke with Oonagh Cousins, one of the people involved in #ThereForME, about the UK government's pathetic so-called "delivery plan" for ME and about the great disappointment many are feeling about it:
#ThereForME
"The Tiger Who Came to Tea… and stayed" by @LongCovidAdvoc
https://www.thereforme.uk/p/the-tiger-who-came-to-tea-and-stayed
Many important issues in this article: the language gap, lack of research, and lack of clinical care for severe ME/CFS patients.
Bedbound patients have a harder time getting any type of medical treatment. They'll be excluded from most research studies. And on top of that, their symptoms and lived experience are often questioned.
#ThereForME guest blog is from @LongCovidAdvoc
They write about the experience of severe ME, exclusion from research and healthcare, and how the sickest patients are putting their health at risk to help others.
https://www.thereforme.uk/p/the-tiger-who-came-to-tea-and-stayed/
@mecfs #SevereME
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
UK Government:
Publication of the long delayed Delivery Plan for ME/CFS has been delayed again. Advocacy group #ThereForME give an update, saying they have been involved in the final stages and there is a plan, but no new funding.
#ThereForME: Improving access to healthcare services for people with ME and Long Covid
From the #ThereForME series:
"The importance of understanding rest"
https://www.thereforme.uk/p/the-importance-of-understanding-rest
"This cultural dismissal of rest is especially harmful to people with ME or Long Covid, who must often rest for prolonged or indefinite periods. They face not only the impact of their condition, but also repeatedly justifying their need to adapt."
🧵
I thought this was good (as I'd expect from Oonagh & #ThereForME team):
"The importance of understanding rest: How my experience of rest as an athlete clashed with my experience of rest as a patient"
https://www.thereforme.uk/p/the-importance-of-understanding-rest
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@chronicillness
@spoonies
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#ThereForME: The importance of understanding rest
#ThereForME: An A to Z of becoming a carer
#ThereForME: World ME Day 2025
From #ThereforME:
We’ve got a great guest blog today from Ella Barnard 🔥
Ella writes about the hermeneutical injustice of ME, why the right words don’t exist and how we can find them.
https://www.thereforme.uk/p/the-hermeneutical-injustice-of-me
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid @longcovid
#ThereForME: ME in the family
I missed this back when it was first published:
"The hermeneutical injustice of ME"
https://www.thereforme.uk/p/the-hermeneutical-injustice-of-me?r=17hcra
When Words Fail
"For me, one of the hardest parts of living with ME was the absence of a clear framework for describing and understanding it. The way I had once made sense of my body no longer applied …
I had no reference points for what I was experiencing."
#MEcfs #PwME #ThereForME #MEAwareness #MyalgicEncephalomyelitis
New Zealand GP Group Disavows Lightning Process Endorsement; BBC’s Con or Cure Takes Skeptical Look at LP
By David Tuller, DrPH
“A small step in New Zealand”
Sometimes there is modest good news.
In this case, the good news is all due to the diligent efforts of Nina Steinkopf, who writes the always useful blog MElife (MElivet). Steinkopf, who was diagnosed with ME in 2010, mostly covers goings-on in Norway and across Scandinavia. That means she frequently writes about the Lightning Process (LP), which seems to have some high-profile and media-friendly advocates in the region.
The modest good news relates to a recent LP paper from a New Zealand general practitioner, Bruce Arroll, and colleagues. Published in February in the Journal of Family Medicine and Primary Care, it was called “An audit of 12 cases of long COVID following the lightning process intervention examining benefits and harms.” (Dr Arroll is known in New Zealand for his advocacy of the LP.)
As I wrote in a post last month, the paper is a load of nonsense, for any number of reasons, including:
“Of the 12 participants, five had self-diagnosed with Long Covid. Specific symptoms experienced by patients are not described at length. Did they suffer from post-exertional malaise? Did any of them meet diagnostic criteria for ME/CFS? Who knows?…The study included no comparison group, so it is impossible to make any legitimate causal conclusions–even though the authors clearly do. The participants took the LP around less than a year, on average, after their bout with COVID-19. That means they could easily have been on a normal path of recovery. Assumptions or claims that any reported improvements were due to the Lightning Process are unjustified and violate standard scientific principles.”
In a glaring lapse, Dr Arroll and colleagues exempted themselves from ethical review for specious reasons. They interviewed multiple people, and ethical review was absolutely required by any standard. No reputable journal should even have ever considered publishing this paper. (Even before considering that it is of poor quality.)
Steinkopf also had big issues with the paper. Unlike me (!!!), she took action.
As she reported in late February, she wrote to the journal to express concerns. Then, as she explained in her most recent post (“A small step in New Zealand,” April 8th), she came across an article about the Lightning Process that Dr Arroll had co-written for New Zealand Doctor, a website for health professionals.
The article, headlined “Using Lightning Process to break cycle of fatigue in long COVID,” was published under a column heading called “Practice.” Steinkopf noticed that the article carried the following note: “This Practice article has been endorsed by the RNZCGP and has been approved for up to 0.5 credits for continuing professional development purposes.” The RNZCGP is the Royal New Zealand College of General Practitioners.
Steinkopf wrote to the RNZCGP, questioning the organization’s endorsement of the practice article in New Zealand Doctor and alerting them to issues with the journal paper on which it was based. A few hours later she received the following response:
“Kia ora Nina,
Thank you for your patience while we investigated this matter.
Please note that the Journal of Family Medicine and Primary Care 2025 is not affiliated with the Royal New Zealand College of General Practitioners (the College). We have, however, located the article in question on the NZ Doctor platform, which is one of our endorsed education providers.
That said, the Lightning Process is not a topic endorsed by the College, as it does not align with current NICE guidelines. [The UK’s National Institute for Health and Care Excellence recommended against the Lightning Process in its 2021 guidelines for ME/CFS.]
We have contacted NZ Doctor and requested that they remove any reference suggesting College endorsement and clearly state that this article is not endorsed by the College.
Please feel free to reach out if you have any further questions.”
And that was that. New Zealand’s GP association was stating clearly that they follow the 2021 NICE guidelines in this instance and do not endorse the LP. Dr Arroll’s article in New Zealand Doctor now carries the following alert: “The RNZCGP does not endorse this content for continuing professional development purposes.” The Journal of Family Medicine and Primary Care has not dealt with the problems involving Dr Arroll’s LP paper, but that’s another issue.
Even if they’re small, small steps are important and should be celebrated! And often small steps do not happen on their own, without some impetus. Luckily, in this case, the observant Steinkopf was paying attention to the details and prompted a substantive change.
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BBC’s Cure or Con takes on the LP
The BBC series of health segments called Dr Xand’s Con or Cure, with the physician and TV presenter Christopher van Tulleken, just took on the Lightning Process. (Apparently van Tulleken’s identical twin is also a physician and TV presenter, and the two sometimes work together. They were not on my radar. Are they well-known in the UK?) The nine-minute segment focused largely on the story of Oonagh Cousins, the former rower forced by Long Covid to give up her Olympic dreams.
(I interviewed Cousins last summer. She always comes across as thoughtful and well-spoken. She now works with #ThereForME, an awareness and advocacy campaign.)
In the segment, Cousins recounted how faith healer and LP-founder Phil Parker himself had recruited her to the program. After she appeared in the press talking about her situation, he contacted her and offered her a free course of LP as a way to get rid of her debilitating Long Covid symptoms. Well, it didn’t work—and it led Cousins to begin advising patients to be wary of the claims made by the LP and other self-styled “mind-body” programs. Besides Cousins, the segment included an interview with Dr Melissa Heightman, a respiratory specialist consultant.
#ThereForME: Research holds the key
Some Things I’ve Read Recently…
By David Tuller, DrPH
Lisa McCorkell leaves Patient-Led Research Collaborative after five years…
Way back in 2020, when it became clear that some people were experiencing prolonged symptoms after an acute bout of COVID-19, Lisa McCorkell helped found the Patient-Led Research Collaborative (PLRC). The organization grew out of an online health-related support group, which published the first survey on the emerging condition that became known as Long Covid. Although some dismissed or denigrated this early research, it helped draw national and international attention to the emerging phenomenon.
McCorkell recently announced that she was stepping down after five years of co-leading PLRC. Betsy Ladyzhets, co-founder and co-editor of The Sick Times, spoke with her about her time with the organization, efforts to advocate for more funding and research, the help and input received early on from ME and ME/CFS advocates, and related issues. From the introduction to the interview:
“During her time co-leading the organization, McCorkell authored influential studies published in journals like Nature Reviews Microbiology and The Lancet’s EClinicalMedicine. She also helped start PLRC’s Patient-Generated Hypothesis Journal, awarded grants to other researchers, and became a leading voice in advocacy as one of the original authors of an op-ed in Nature calling for a Long COVID Moonshot — a call that later became a bill in the U.S. Senate. McCorkell was recognized as one of Nature’s 10 people who helped shape science in 2022.”
You can read and view the interview here.
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News about U.S. destruction of research programs
While I was in Australia, I watched from afar as my country’s newly installed fascist government rampaged through the Department of Health and Human Services (HHS) to and its research arm, the National Institutes of Health (NIH) slash funding for essential programs right and left. Among the victims—research into COVID-19, including Long Covid, as well as ME/CFS. Multiple outlets covered the carnage.
In a story headlined “Saying ‘pandemic is over,’ NIH starts cutting COVID-19 research,” Science offered multiple examples of cancelled projects, including the following:
“One major NIAID program that began in May 2022 and was just killed, Antiviral Drug Discovery Centers for Pathogens of Pandemic Concern, promised to spend $577 million on nine U.S.-based efforts to develop new drugs to treat COVID-19. Part of that program was also aimed at designing antivirals to target entire families of disease-causing viruses, including bunyaviruses (Rift Valley fever), filoviruses (Ebola, Marburg), flaviviruses (yellow fever, dengue, Zika), paramyxoviruses (measles), picornaviruses (common cold), and togaviruses (chikungunya). The termination of the program has a ‘misleading rationale’ and is a ‘pointless, ill-advised move that will hurt U.S. science and pandemic readiness,’ says Charles Rice, a Nobel Prize–winning virologist at Rockefeller University who co-leads one of the nine centers that was funded under that program.”
Scientific American wrote about HHS’ decision to close the Office for Long COVID Research and Practice, which was established to coordinate government efforts on researching and treating the condition. Key passage:
“The closure sends a harrowing message to the many adults and children who are still navigating the complex condition, says Ziyad Al-Aly, a leader in long COVID research and a clinical epidemiologist.
“‘People have been scarred by this pandemic in the form of long COVID, and their disease is real and requires help,’ Al-Aly says. ‘The intent of the office was to really catalyze progress and realize efficiencies. Undoing it risks undoing a lot of the work, delaying a lot of progress, and [it] really is a disservice today to the more than 20 million Americans who are suffering from long COVID.’”
Fierce Biotech (I never heard of it either) covered the news about the decision to strip funds from Columbia University’s Center for. Solutions for ME/CFS—collateral damage from the president’s retribution campaign against academic institutions. Ian Lipkin, who heads the center, told Fierce Biotech: “The field of ME/CFS is ripe for clinical trials…These cuts have brought our work to a dead halt.”
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#ThereForME essay from a patient with severe ME
The website for the #ThereForME campaign frequently runs essays by those impacted. Last month, it published a moving piece by Neil Benton, 28, from Stockport, England, who has had ME for four years. Benton experienced a period of severe ME but received little help from the National Health Service (NHS), he wrote.
Our despair was compounded by the realisation that no-one within the NHS knew what to do. Months passed, and there were meetings, referrals, emails and phone calls, but little meaningful help. A year in, my parents wrote to my doctors’ surgery: ‘It feels like we are in an unending loop, being passed around as no one agency or person is willing or able to take charge and formulate a care plan for Nick, and as a result, after over a year of meetings, visits and half-promises, we feel very let down.’
You can read the rest of Benton’s moving piece here.
#ThereForME: The hermeneutical injustice of ME
#ThereForME: Probing an inconvenient truth
#ThereForME: Stuck at the bottom of a well
#ThereForME: Campaign Update #14: Community Campaigning Together
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