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MAY 12th: International ME/CFS and FM Awareness Day
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May 12th is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). The CIND illnesses include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) Multiple Chemical Sensitivity (MCS), and now Long Covid.
May 12th was the birthday of Florence Nightingale, who was believed to have suffered from ME/CFS. The aims on this day are to increase public awareness of the disease, educate the public, and lobby for more research into the causes and cure for ME/CFS and other Chronic Immunological and Neurological Diseases.
Local, regional, and national organizations typically schedule events during the week of May 12, as well as the weeks just prior and after.
How to participate:
Wear Blue Add a blue or purple ribbon to your FB page. If you have a Twitter account, post something about ME/CFS. Events:
May 10: INIM 2024 Conference: Friday, May 10, 10 -5pm. Dr. Bateman presents at12:55pm, MDT. Click to HERE to register.
May 14: For their ME/CFS Awareness Day event, Bateman Horne Center of Excellence expert clinicians and researchers will highlight recent advancements and recognize your firsthand experience. Register HERE.
May 17: MEAction is partnering with the Writers Guild Initiative (WGI) to offer creative writing workshops for people with ME and Long COVID. The deadline to apply is Friday, May 17th, 2024. Space is limited, and only 30 slots are available. Apply HERE.
May 19: Blue Sunday, the Tea Party for ME. On Sunday 19th May, people from all over the world will meet up online to chat and leave comments on each other’s posts. While doing so they’ll be enjoying tea and cake (or whatever their delicate digestive systems can manage) and donating what they can to M.E. charities and causes. Read more HERE.
AMMES is a 501(c)(3) national nonprofit. Your donations are tax deductible.
You can donate to our financial crisis fund HERE.
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‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal
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"It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes."
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Inside a push to create an NIH office for post-infection chronic illness
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On Friday, the Federation of American Scientists released a white paper calling for the creation of the new NIH office. The authors cite economic, practical and moral justifications, arguing that these conditions affect millions of Americans in total, but don’t fit neatly into the existing structure, which is often siloed by organ or disease process.
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Trial By Error: Will MAGENTA’s Null Results Finally End Professor Crawley’s Long ‘Reign of Error’? |
For years, Professor Esther Crawley, the University of Bristol’s methodologically and ethically challenged ME/CFS investigator, has hoovered up millions of pounds from public and private funders to support her misbegotten research. She achieved this success as a grant magnet despite abundant and easily available evidence that she was violating core principles of scientific research. Now, perhaps, the disastrous results of a much-ballyhooed study—“Graded exercise therapy compared to activity management for paediatric chronic fatigue syndrome/myalgic encephalomyelitis: pragmatic randomized controlled trial”–could help end her long “reign of error.”
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Identification of CD8 T-cell dysfunction associated with symptoms in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID and treatment with a nebulized antioxidant/anti-pathogen agent in a retrospective case series
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Here, in this small study, we present two observations that appear potentially fundamental to the pathogenesis and treatment of Long COVID and ME/CFS. The first is that both disorders appear to be characterized by dysfunctional CD8 T-cells with severe deficiencies in their abilities to produce IFNγ and TNFα. The second is that in a small retrospective Long COVID and ME/CFS case series, this immune dysfunction and patient health improved in parallel with treatment with an immunomodulatory, antioxidant pharmacological treatment with anticipated anti-pathogen activity. This work provides evidence of the potential utility of a biomarker, CD8 T-cell dysfunction, and suggests the potential for benefit from a new nebulized antioxidant/anti-pathogen treatment. These immune biomarker data may help build capacity for improved diagnosis and tracking of treatment outcomes during clinical trials for both Long COVID and ME/CFS while providing clues to new treatment avenues that suggest potential efficacy for both conditions.
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Central 5-HTergic hyperactivity induces myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)-like pathophysiology
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"Our study provides the first translational evidence for the involvement of 5-HTergic hyperactivity in the pathophysiology of ME/CFS. With our novel animal model for ME/CFS, this study helps to clarify one of the potent pathophysiological mechanisms of this syndrome. In addition, we provide diagnostic clues (high central serotonin) that can be used to differentiate ME/CFS from similar diseases, such as fibromyalgia and depressive disorders."
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Subcortical and default mode network connectivity is impaired in myalgic encephalomyelitis/chronic fatigue syndrome
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This novel investigation is the first to report the extensive involvement of aberrant ponto-cerebellar connections consistent with ME/CFS symptomatology. This highlights the involvement of the brainstem and the cerebellum in the pathomechanism of ME/CFS.
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INIM 2024 Conference: May 10 |
This conference is an annual event that aims to shed light on ME/CFS, Gulf War, and other chronic illness awareness and research. The day will include a variety of discussion-based panels, ME/CFS & Gulf War Illness based presentations, as well as interactive exhibitor booths. The event will take place on May 10th from 10:00 AM - 5:00 PM EST, attendance will be available in-person as well as virtually.
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ME/CFS Awareness Day: May14 |
At our ME/CFS Awareness Day event, Bateman Horne Center of Excellence expert clinicians and researchers will highlight recent advancements and recognize your firsthand experience. Additionally, we invite you to share your story by contributing content that honors your personal journey with ME/CFS or post-COVID ME/CFS. Whether it's through photos, brief video clips, poems, artwork, or other mediums, your contribution will help us create a powerful montage video indicating the facets of this complex illness. By providing your content, you grant Bateman Horne Center permission to use and share it publicly. It may be shared broadly via media and news outlets. You're invited to submit questions for the panel and content for the reflections video by Wednesday, May 1st.
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