News: 2024 July 21
Maeve Boothby O’Neill’s Inquest, Update to NIH & ME “Effort Preference”, Research lists updated
A few items I wanted to bring to your attention.
Maeve Boothby O’Neill’s Inquest
As many of you are likely aware, Maeve Boothby O’Neill died of ME in 2021 and we have been waiting for an inquest ever since. It seems fairly clear that the medical system in the UK failed to give her adequate care for ME’s related effects which led to her death.
That inquest begins this coming Monday (July 22) and can be viewed online by requesting access from the coroner..
Last month Sarah, Maeve’s mother, (@swastrosarah.bsky.social) posted the following on Bluesky social media platform.
“#InquestUpdate my daughter died from medical and local authority neglect of #VerySevereME Oct 2021. 2 weeks full hearings begin 10am Mon 22 July 2024. 2-3 witnesses each day. She was 27 and wanted to live. Please contact HM Coroners for details of how to attend remotely.”
“Note *change of email address* for attending remotely via live link: coroner@devon.gov.uk case ref 8057264”
A recent article in the Times, Sajid Javid: Labour must deliver on ME as patients suffer without a cure, gives a good overview of the situation
From the article:
“Maeve’s inquest will examine delays in providing Maeve with palliative care and examine whether different clinical decisions might have saved her life. The management of severe ME by the NHS will come under scrutiny, as well as “any prevention of future deaths matters that arise”. It comes after repeated warnings of the lack of specialist inpatient services regionally and nationally for patients with severe ME.”
A recent interview with Maeve’s father, Sean O'Neill, talks about Maeve and the upcoming inquest. That interview on BBC Radio 4 Today can be heard HERE.
This situation is not an isolated case. I truly hope this shines a light on the suffering so many deal with and brings new understanding about the reality of ME. We need medical professionals (around the world) to improve the care they offer.
NIH & Myalgic Encephalomyelitis “Effort Preference”
There is an addition to my recent article about Jeannette Burmeister’s Call to Action. The article covers her four part series of articles, The NIH Intramural ME Study: “Lies, Damn Lies, and Statistics”.
After I sent out the email, Jeannette provided me with a very helpful overview. I have added this to the article. I am including it here to be sure those who received the original article saw this addition.
“The NIH authors redefined ME—based on a sample size of 15 patients—as characterized by an 'unfavorable effort preference,' which they allege is the false perception of effort, rewards, and fatigue resulting in deconditioning and functional disability.
This is identical to Simon Wessely’s biopsychosocial theory of ME as a disorder of the perception of effort.
According to my analysis of the underlying EEfRT data, the NIH authors misinterpreted and misrepresented them through improper statistical manipulation, the omission of relevant analyses, the failure to exclude patients who were physically too limited to participate in the EEfRT, etc.
In fact, NIH’s own data unequivocally refute their claim, raising serious issues of research misconduct. A retraction would be the only reasonable fate for this paper if science as a field still has any integrity and credibility.”
Please send emails for an investigation into the EEfRT research as indicated in the Call to Action found at the bottom of Part 4 which is also explained in the ME Global Chronicle article, Call to Action: Investigate and Retract the NIH Intramural ME Study,
My husband and I have submitted emails to:
NIH Director, Dr. Monica Bertagnolli: monica.bertagnolli@nih.gov
Director of Research Integrity and the Agency Intramural Research Integrity Officer (AIRIO), Dr. Kathy Partin (https://oir.nih.gov/sourcebook/ethical-conduct/research-misconduct): kathryn.partin@nih.gov.
NOTE: I received confirmation this email had been received.
We also sent a physical letter (return receipt requested) to:
HHS Office of the Inspector General (OIG)
Research lists updated
As explained in my previous article Myalgic Encephalomyelitis Research, I (with the help of others) am tracking research that uses patients who fulfill either the International Consensus Criteria (ICC) or the Canadian Consensus Criteria (CCC).
These lists are updated periodically as I am able and a recent version has now been uploaded. Usually the updates include the latest research, but occasionally an older publication is found that is added.
ME-ICC research - patients in this research fit the International Consensus Criteria.
ME/CFS-CCC research - patients in this research fit the Canadian Consensus Criteria.
One older paper soon to be added to the ICC list is from October 2022. Factors Influencing the Prognosis of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome states the following:
“The study findings confirmed the poor prognosis of ME/CFS and the deleterious effect of diagnostic delay on disease progression. Interestingly, being older at disease onset was associated with better outcomes, which offers hope to patients for recovery/improvement even at an advanced age.”
The 168 patients selected for this study fulfilled the ICC which gives me more confidence in the validity of the results. It also underscores the importance of early diagnosis.
The ICC is the ONLY criteria that does not require a waiting period for diagnosis. We need medical professionals educated to suspect ME as a possible diagnosis as early as possible.
They then need to know how to thoroughly screen to confirm that diagnosis. That information can be found in the Myalgic Encephalomyelitis - Adult & Paediatric International Consensus Primer for Medical Practitioners (ICP), written in 2012. This ICP can be found online for free in multiple languages. Links to those translations can be found in the ME-ICC Info Table of Contents - MASTER LIST.
Wishing everyone better days ahead… until next time,
Colleen
Information provided here or in comments is not to be considered medical advice
Research Sources
Ghali A, Lacout C, Fortrat JO, Depres K, Ghali M, Lavigne C. Factors Influencing the Prognosis of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Diagnostics (Basel). 2022 Oct 19;12(10):2540. doi: 10.3390/diagnostics12102540. PMID: 36292229; PMCID: PMC9600584
I truly believe early diagnosis is key! I was diagnosed fairly “early”, according to an ME specialist: a year after symptom onset. My symptoms were clear enough for me 9 months after symptom onset, so I sought help from a health coach with experience in ME (I was unable to leave the house back then). I am sure that was crucial for the improvement I’ve been experiencing. We really need the earliest diagnosis possible for people as it will save people from much suffering!!
Will we be able to access a transcript of the hearings when they are finished? I’m in the US & w/severe ME will not be able to follow live for whole period. Also, easier for me to read than hear
I’m a Sociologist, Social Psychologist w/knowledge of the various “social construction” theories of human behavior. But what I’ve read so fair re: recent NIH study is that it’s being applied to prove a pre-existing bias by the main researcher, who essentially works backwards from the results he wants to create a “game theory” that has not been shown to be an appropriate tool for measuring ppls actual physical ability (which the research failed to do as well by rejecting the two-day post-exertion testing, substituting it with yet another measure of fatigue that hasn’t been established scientifically a as relevant or accurate means of measuring the symptoms we unfortunately call fatigue.
Using the “black box” theory of unconscious bias against effort w/o necessary ground work establishing all parts of the tests as valid measures for ME patients is unacceptable - by this logic, anyone could make up a theory about some unconscious bias to reject the existence of any illness, regardless of the lived, observed & measured symptoms of the illness and yrs of research findings indicating that the millions of people have a real physical illness.
It’s a flimsy, largely unproven theory of perception that completely fails in methodological & theoretical grounds. It doesn’t even pass the muster of basic questions of validity, reliability or generalizability. Worse, there is completely zero consideration of a long list of alternative possible explanations for the results - ie people chose less difficult tasks bc they were too exhausted and in too much pain to do more.
Just bc someone claims that there is this invisible black book of misperceptions in the mind of patients, doesn’t mean it is actually there. And there’s no evidence offered to prove that said game can actually predict physical behavior by lab-based game theory.
There is one more problem that I don’t remember Jeannine writing about. I believe that most spent years suffering from symptoms before we were finally diagnosed with the illness. The NIH research concludes that ppl with ME may have some kind of illness, but it is not so bad as to keep them from activity, inactivity is caused by altered perceptions of what we think we can do, not by our experience of what happens when we over-exert or the felt costs of exertion doing a game theory tests in a lab. Then how do we explain the years of post-exertion exhaustion, and patterns of over-exertion and crash that ME patients experience before they know what they have ME or know anything about it?
I’m so tired of this renewed version of mass female hysteria being the problem. It was at least 6-7 yrs before I had a diagnosis. Even then I don’t think I fully understood the post-exertion aspect of the disease (I’ve been sick for 22+ yrs). But I was exhausted. And I often found I could not continue with even simple. Low energy tasks.
So what is the explanation - that the invisible box of altered perceptions was created by some physic female connection w/ME patients. I don’t even know what ME was. (Sorry ME men , I don’t mean to ignore your existence, but these constant efforts to negate the seriousness and reality of ME stinks of misogyny - and this psychologizing of illness has been the bane of women’s existence for a very long time - you’d think the fact that medicine has always been wrong would eventually lead to abandoning the practice)
I am embarrassed as an American scholar to know that my government has financed & chosen to embrace such a flimsy piece of biased work.
In sum, I can’t imagine a first year graduate student creating such a flawed study (and using $4 million in the process) and get away with it.