News: 2024 June 27
Younger videos, UniteToFight conference, Severe ME in Denmark, Nanoneedle, Long COVID criteria
The following are a few things I thought worth sharing.
Jarred Younger videos
I previously wrote about Jarred Younger’s video series HERE. Jarred Younger’s Neuroinflammation, Pain, and Fatigue Lab at University of Alabama in Birmingham is doing research into ME and other diseases.
I haven’t been able to watch all of his videos, but I appreciate that ME Global Chronicle has created a comprehensive list of the videos with brief synopsis. Their list can be found HERE.
UniteToFight Conference
On May 15/16, the UniteToFight group put together a conference. Videos from that conference have now been posted on their YouTube channel.
Description of UniteToFight purpose from their website.
“Our mission is to create an inclusive, interactive space to address unmet needs and drive societal change. As an international, community-driven platform, we unite passionate voices through digital and tangible means, supported by crowdfunding. Our goal is to debunk myths, foster research, and transform public perception of ME/CFS and Long Covid, making recognition and understanding a collective endeavor..”
The program with a list of presenters can be found HERE.
While many of the topics were not ME specific, I wanted to bring awareness to this endeavor. I hope they are paying attention to the importance of stratifying patient groups as they look into the immunological issues, medical treatment options, microclots, muscle dysfunction, etc. that are seen in ME and other patient groups.
Severe ME in Denmark
A recently published paper, The most severely ill patients with ME/CFS in Denmark, based on nineteen severely ill ME patients in Denmark found that these patients are neglected. The nineteen patients were diagnosed based on the International Consensus Criteria (ICC).
From the paper:
"In conclusion, the most severely ill patients with ME/CFS and their caregivers must be characterised as a systematically neglected patient group not comparable to any other similarly ill group."
This isn’t really news to those of us who see the extreme level of neglect and abuse in the ME community. I think this may be useful as a resource when advocating for ME. The neglect of people with severe ME is seen in all other countries.
Nanoneedle
As early as 2017 we heard about nanoneedle technology research that was being developed by R. Esfandyarpour and Ron Davis (funders included Open Medicine Foundation). In 2019 a paper, A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), was written that stated:
“Taking advantage of advancements in micro/nanofabrication, direct electrical detection of cellular and molecular properties, microfluidics, and artificial intelligence techniques, we developed a nanoelectronics blood-based assay that can potentially establish a diagnostic biomarker and a drug-screening platform for ME/CFS. Given the significance of this assay, we envision it has the potential to be widely employed in research laboratories and clinics in the future as an aid to physicians as well as to our colleagues in the ME/CFS research community.”
I hadn’t heard any updates for a while but there is now information coming out of University of Surrey in the UK that they are following up on this line of research. The article, ME Research UK and the ME Association announce funding for a study that aims to create a diagnostic test for ME/CFS, states that “ME Research UK and the ME Association have jointly funded a new 12-month study that will build upon these initial findings.”
It goes on to state:
“The UK researchers have already used a more robust approach to identify statistically significant differences between the electrical properties in blood from people with ME/CFS compared to healthy and multiple sclerosis (MS) controls (using samples from the UK ME/CFS Biobank).Their preliminary work suggests that the 2019 results from America are repeatable and can be explored in more detail. Furthermore, that they have the potential to be used as a routine diagnostic test.”
Long COVID criteria
While I try to focus on news items that will most likely impact people with myalgic encephalomyelitis, I found the new Long COVID criteria concerning because it looks similar to the harmful approach that people with ME have dealt with for decades.
In the history of ME, we have seen a concerted push toward vague criteria. The result has been harmful misinformation which reinforces systemic institutional bias. Mixing together multiple patient groups has not only harmed those who have ME, it has also impacted those who are unable to obtain testing that could provide more accurate diagnosis. I have written about that in previous articles. See my article, Stratifying Patients for ME Research, to better understand the importance of narrower criteria.
I have been approached by a few people asking what I thought about this Long COVID criteria. I expressed my concerns about this being a repeat of what we saw happen to ME when broad vague criteria replaced Ramsay’s original description.
I was quoted in a recent article about this new criteria in the article New NASEM reports offer broad definition, highlight the seriousness of Long Covid, by Betsy Ladyzhets in The Sick Times. I stand by the following statement:
“Colleen Steckel, a longtime ME advocate who argues for research and policy to use a more specific definition of that disease, called the new NASEM report “awful,” echoing her criticism of the 2015 IOM ME/CFS report. The NASEM definition will “bury the severe patient group by keeping them out of research” and is “not useful for clinical care,” Steckel said in an email.”
I am not the only one with concerns. Leonard Jason wrote an article in MedPage Today titled Here's What Is Wrong With the National Academies' Long COVID Definition - Overly broad criteria won't help patients in the long run
In it he discusses how the criteria can include people who have only one of over 200 symptoms that may not even significantly impact their quality of life.
I agree with his statement:
“Physicians might feel better providing a nebulous diagnosis like the proposed National Academies long COVID definition, but in the long-run, I doubt this helps patients.”
I keep hoping the Long COVID advocates will learn from what happened to people with Myalgic Encephalomyelitis, but their new criteria is a disturbing déjà-vu.
Until next time,
Colleen
P.S.: If you agree with me that the US government needs to adopt the International Consensus Criteria, please sign the #PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC petition.
Sources
la Cour, P. (2024). The most severely ill patients with ME/CFS in Denmark. Cogent Public Health, 11(1). https://doi.org/10.1080/27707571.2024.2359958
A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS); R. Esfandyarpour, A. Kashi, M. Nemat-Gorgani, +1, and R. W. Davis; April 29, 2019; 116 (21) 10250-10257 https://doi.org/10.1073/pnas.1901274116
Information provided here or in comments is not to be considered medical advice
Thanks for putting all these videos in one place for easier access. Lots to digest... The "electrical" theory sounds really interesting.