Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T, Staines D, Powles ACP, Speight N, Vallings R, Bateman L, Baumgarten-Austrheim B, Bell DS, Carlo-Stella N, Chia J, Darragh A, Jo D, Lewis D, Light AR, Marshall-Gradisbik ...
Using a tool called Raman spectroscopy UK researchers state they have gotten closer to producing a long-sought diagnostic biomarker for chronic fatigue syndrome (ME/CFS)
The American ME and CFS Society is dedicated to serving the needs of patients and caregivers through support, advocacy, and education. We seek to channel patient perspectives to government agencies, committees and initiatives, and to unify the ME and CFS community by pursuing the common goals of expanding research, increasing...
ME/FM Action Network is a Canadian, registered, non-profit organization dedicated to advancing the recognition and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Syndrome (FMS) through education, advocacy, support, and research. Copyright 2020 National ME/FM Action Network
Despite the boost in numbers, I think making the jump from reddit has been too labour intensive for LC/PASC and ME/CFS communities. It's the one thing I still visit on reddit.
It's not much, but I am beginning to put a bit of data on !mecfs@kbin.social, and longhaulers are welcome there. It also collects mastodon toots on related hashtags.
People living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) struggle not only with extreme exhaustion and the cognitive problems known as brain fog, but with a profound lack of information about what causes their symptoms and how to treat them. Scientists have yet to pin down the biology underlying the...
Akiko Iwasaki, an immunobiologist at Yale School of Medicine who was not involved in the work, praises the research as “very well done” but cautions that the suspect protein is likely “a piece of the puzzle, as opposed to explaining the whole disease.” The findings suggest it could act as one of several “middlemen” between whatever sparks the illness and symptoms such as fatigue, she says.
Paul Hwang, a physician-scientist at the National Heart, Lung, and Blood Institute (NHLBI), and his colleagues initially set out to study a 38-year-old woman with a cancer-promoting mutation in a gene called TP53. Unlike her brother and her father, who shared this mutation, the woman (referred to as S1 in the study) was experiencing extreme long-term fatigue, though she hadn’t received a formal ME/CFS diagnosis.
Hwang’s team examined tissue samples from her muscle, looking for abnormalities in biochemical pathways related to TP53. That search revealed high levels of a protein called WASF3. It’s known to play a role in a cell’s ability to move, Hwang says, but the team found a little-cited 2011 study of gene activity in ME/CFS patients that predicted it might contribute to that condition, too.
The NHLBI researchers wondered whether WASF3 was interacting with mitochondria, cellular compartments responsible for energy generation that have been suggested to malfunction in people with ME/CFS and Long Covid. Sure enough, by changing levels of WASF3 inside cultured cells from S1 as well as in other human and mouse cells, the team found the protein could disrupt mitochondrial function. Specifically, high levels of WASF3 interfered with the assembly of mitochondrial proteins into molecular complexes that support normal energy production.
Hwang’s group next genetically engineered mice to produce elevated amounts of WASF3. These animals also had defects in their mitochondrial function and were only able to run about half as far on a treadmill as regular mice.
Curious as to whether these results might be relevant to people formally diagnosed with ME/CFS, the researchers compared muscle samples from 14 people living with the illness with those of 10 healthy individuals. They found higher average levels of WASF3—and lower levels of the associated mitochondrial protein complexes—in people with the condition.
“It’s extremely encouraging” to see this kind of detailed molecular approach applied to an understudied illness like ME/CFS, says Mady Hornig, a physician-scientist studying the condition at the Columbia University Mailman School of Public Health. Although the NHLBI researchers didn’t study Long Covid directly, their findings “stand to address a very common set of health issues that are very tightly tied to disability in [both] Long Covid and ME/CFS,” she says.
Hornig, who has had Long Covid since 2020, adds that further work could try to address whether WASF3 also affects brain function. Deficits in brain energy metabolism may explain the cognitive fatigue that many ME/CFS patients find most debilitating, she says.
It’s not clear what causes high WASF3 levels in the first place. Hwang suggests a role for endoplasmic reticulum (ER) stress—a dysfunction of membranes that help the cell fold up its proteins. Viruses can trigger ER stress, perhaps explaining why ME/CFS and related conditions often arise after infection. (S1 told Hwang her fatigue started after she caught mononucleosis as a teenager.)
Several of the lab’s experiments support Hwang’s proposal: Both S1 and the people with ME/CFS had biochemical signatures of ER stress in their muscles, and treating S1’s cells in a dish with a drug that blocks ER stress lowered WASF3 levels and restored mitochondrial function. On the flipside, using toxins to artificially induce ER stress in cultured cells or in mice caused a rise in WASF3 levels, Hwang says.
But more work is needed to understand this link, says Pere Puigserver, a cell biologist at Harvard Medical School. ER stress can itself be prompted by mitochondrial dysfunction, making it hard to pin down the order of events leading to fatigue, he says. WASF3’s multiple cellular roles mean it might have other effects in people with ME/CFS, too, he adds.
Hwang acknowledges there are likely to be other pathways causing fatigue in ME/CFS and Long Covid, and that the drivers of illness might be different for different people. His group is now looking at drugs that could put the brakes on ER stress or reduce WASF3’s effects on mitochondria, with an eye toward designing a clinical study.
Associated New Zealand ME Society (ANZMES), serving New Zealanders with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome since 1980. ANZMES objects in the constitution are:...
Thanks, that makes sense in the context of what you experience (for me I can want to be clean all I like, but if I push it too far I literally can't walk or move my arms, so would paradoxically end up dirtier).
If I'm understanding you correctly, improving baselines and tolerance is more important than specific symptoms?
Ok, I have no idea why this bothers me and I don’t even know what to call it. My husband is a “come here” guy. Something he thinks is interesting and wants to show me - hey, come here! Nuclear apocalypse - hey, come here! Why the hell wont he just tell me why he wants me to get up, trudge to wherever he is, so that he can...
For example, myalgic encephalomyelitis (sometimes referred to as chronic fatigue syndrome) has been dismissed and under-researched for decades. The lack of research has perpetuated a limited understanding of the underlying biology, a lack of diagnostic testing, a lack of respect for patient experiences and an embarrassing lack of action. Research funding is extremely low relative to the burden of the disease and its prevalence.
About half of long COVID patients also meet the diagnostic criteria for myalgic encephalomyelitis. By our sheer number, our advocacy for more research and clinical trials should be harder to dismiss.
This is dismissed and underfunded world-wide.
The status quo - pretending it's all in your head - is in the interests of insurance companies (and governments with disability welfare systems).
UK DecodeME study still recruiting participants - needs more! (www.decodeme.org.uk)
Join the ME/CFS Biomedical Partnership to help create the world’s biggest study of causes of ME/CFS.
Canadian Consensus Criteria: "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" (www.meresearch.org.uk)
Please note this is a pdf
Myalgic encephalomyelitis: International Consensus Criteria (www.ncbi.nlm.nih.gov)
Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T, Staines D, Powles ACP, Speight N, Vallings R, Bateman L, Baumgarten-Austrheim B, Bell DS, Carlo-Stella N, Chia J, Darragh A, Jo D, Lewis D, Light AR, Marshall-Gradisbik ...
A Potential Blood Test for Chronic Fatigue Syndrome (ME/CFS)? - Health Rising (www.healthrising.org)
Using a tool called Raman spectroscopy UK researchers state they have gotten closer to producing a long-sought diagnostic biomarker for chronic fatigue syndrome (ME/CFS)
Change.org Petition to Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review (www.change.org)
This petition has been posted on behalf of the committee of the international Science for ME forum:...
Oral Rehydration Solution More Effective than Saline IV at Improving Orthostatic Intolerance - Health Rising (www.healthrising.org)
Oral rehydration solution may provide a cheap, effective and safe way to improve orthostatic intolerance in chronic fatigue syndrome and POTS....
Please visit our sister community mecfs.
This magazine collects helpful resources. Please visit mecfs at the following links:...
American ME and CFS Society (ammes.org)
The American ME and CFS Society is dedicated to serving the needs of patients and caregivers through support, advocacy, and education. We seek to channel patient perspectives to government agencies, committees and initiatives, and to unify the ME and CFS community by pursuing the common goals of expanding research, increasing...
European ME Alliance - Home Page - A Voice for People with ME in Europe (www.europeanmealliance.org)
European ME Alliance
Canada National ME/FM Action Network (www.mefmaction.com)
ME/FM Action Network is a Canadian, registered, non-profit organization dedicated to advancing the recognition and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Syndrome (FMS) through education, advocacy, support, and research. Copyright 2020 National ME/FM Action Network
Long COVID Recovery Remains Rare (time.com)
Without proven treatments, many people are still sick....
A protein that disrupts cells’ energy centers may be a culprit in chronic fatigue syndrome (www.science.org)
People living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) struggle not only with extreme exhaustion and the cognitive problems known as brain fog, but with a profound lack of information about what causes their symptoms and how to treat them. Scientists have yet to pin down the biology underlying the...
The Associated New Zealand ME Society (anzmes.org.nz)
Associated New Zealand ME Society (ANZMES), serving New Zealanders with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome since 1980. ANZMES objects in the constitution are:...
The ME Association - The ME Association United Kingdom (meassociation.org.uk)
WE HELP PEOPLE WITH...
Emerge Australia – National Australian not-for-profit organisation for information, support and advocacy about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). (www.emerge.org.au)
European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, and Care of People with ME/CFS in Europe (kbin.social)
Abstract (link goes to full text)...
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management - Bateman et al, 2021 (www.mayoclinicproceedings.org)
Abstract (link goes to full text)...
Resources | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) - CDC (www.cdc.gov)
CDC's ME/CFS Resources - toolkit and resources on page
ME/CFS Resources (NIH) (www.nih.gov)
ME/CFS resources for researchers and patients.
Why does “come here” bother me so much?
Ok, I have no idea why this bothers me and I don’t even know what to call it. My husband is a “come here” guy. Something he thinks is interesting and wants to show me - hey, come here! Nuclear apocalypse - hey, come here! Why the hell wont he just tell me why he wants me to get up, trudge to wherever he is, so that he can...
Opinion: Long COVID is debilitating to me and 65 million other people. Where is the urgency to treat it? (www.latimes.com)
The mobilization against COVID-19 was impressive. A similar investment is needed to understand and treat the chronic resulting illness.