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Wisdom 4 ME |
ME/CFS News & Advocacy |
Co-Principal Investigator Dr Luis Nacul, CureME Biobank, London School of Hygiene & Tropical Medicine, says: “Unlocking the genetic susceptibility to ME/CFS is a key part of understanding what causes ME/CFS and the disease mechanisms involved. This, in conjunction with other biomedical research into ME/CFS, should finally pave the way to better diagnosis and the development of specific treatments for this debilitating disease.”
On march 17, a day after LeClerc came down with her first symptoms, SARS-CoV-2 sent Fiona Lowenstein to the hospital. Nine days later, after she was discharged, she started a Slack support group for people struggling with the disease. The group, which is affiliated with a wellness organization founded by Lowenstein called Body Politic, has been a haven for long-haulers. One channel for people whose symptoms have lasted longer than 30 days has more than 3,700 members.
Source: Thousands Who Got COVID-19 in March Are Still Sick – The Atlantic
The long-term illnesses that can follow viral infections can be devastating — and are devastatingly common. In 2015, the nation’s top medical advisory body, the Institute of Medicine, estimated that between 800,000 and 2.5 million U.S. residents live with the illness or illnesses awkwardly named myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). An estimated three-quarters of these cases were triggered by viral or bacterial infections.
Senator Dianne Feinstein (D-Calif.) joined Senator Edward J. Markey (D-Mass.) and a bipartisan group of their colleagues to call on Senate leadership to prioritize medical research funding for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in any upcoming coronavirus relief package. Viral outbreaks, similar to the current coronavirus pandemic, have triggered an increase in ME/CFS patients in the past. Action is needed to prepare for a potential wave of post-coronavirus patients with ME/CFS like symptoms. The National Institutes of Health (NIH) plays an indispensable role developing methods to properly diagnose and treat ME/CFS patients. By increasing medical research funding for ME/CFS, Congress can equip the health care system with the tools needed to effectively respond to the coronavirus pandemic ensuring no patients are left behind.
Source: The Fear in My Doctor’s Eyes – Anil van der Zee“ME patients are often described as difficult and hateful. We’ve seen social science researchers complain in the media about personal attacks. Now besides the fact that I can imagine it’s not easy to get continuous criticism on your work, we are talking about valid criticism on flawed science and the scientist, not the person.”
‘See ME’ is a cover of the song Chasing Cars by Snow Patrol. The lyrics have been adjusted to reflect the lives of people suffering from ME/CFS. Many have become bed or housebound and live an isolated life between four walls. This song is to commemorate the millions missing who have disappeared from public life because of ME/CFS.
Created by Belgian artist Robin De Man and his son Seppe.
Living with all the pain, the exhaustion and over 200 miserable symptoms 24/7 — 365 days a year, many times we only see our weaknesses. We see what we can’t do and what we’re missing out on. Living with these numerous symptoms could certainly be considered to require superhuman powers.
Source: A Message for Chronic Illness Superheroes – Prohealth
Christina Baltais created some artistic collages for May 12th ME/CFS awareness day. Lives Capsized – “ME/CFS can strike any age, gender (most commonly affects women), and ethnicity (people of colour more likely to be affected). It can take down even the strongest and most robust in our communities. It’s a disease that does not discriminate; overturning the lives of millions and their families worldwide.”
Source: Using Art to Bring Visibility to Myalgic Encephalomyelitis | The Mighty
“These findings are important because they show for the first time that there is an antiviral activity in the serum of patients with ME/CFS that is tightly associated with an activity that fragments the mitochondrial network and decreases cellular energy (ATP) production,” said Robert Naviaux, MD, PhD
“This paper will be a paradigm shift in our understanding of potential infectious causes behind ME/CFS. Human herpesvirus 6 and HHV-7 have long been thought to play a role in this disease, but there was hardly any causative mechanism known before,” said senior co-author Bhupesh K. Prusty, PhD.
Source: For ME/CFS Patients, Viral Immunities Come at a Devastating, Lifelong Cost
May is ME/CFS awareness month, be sure to check out the #MillionsMissing hashtag to learn about virtual events in the coming weeks.
Source: #MillionsMissing – Twitter