MillionsMissing Canada

Lyme Disease Researchers Are Now Looking Closely at Long Haulers 23.11.20 Guelph researchers from the G. Magnotta Lyme Disease Research Lab are joining researchers from other fields in looking for answers on the lasting misery of coronavirus long-haulers.... Dr. Melanie Wills, director at the lab, said when the pandemic hit in early spring, they saw a potential similarity between COVID-19 and Lyme disease some patients just don't seem to get better. Evidence from previous coronavirus outbreaks, especially the severe acute respiratory syndrome (SARS) epidemic, suggests these effects can last for years. "We kind of saw this coming and now we need to jump into this and really figure out what's going on," Wills added. "It's like a snowball rolling down a hill with COVID now and so my question is, if we are seeing a chronic fatigue syndrome or fibromyalgia syndrome emerging from the COVID, is that finally going to shine a spotlight on these types of diseases that have been really ignored to our own peril?" Wills said even though COVID-19 vaccines are on the horizon, the research is still very important. "I think it's important to acknowledge that even if we begin to emerge from this pandemic situation in the next couple of months, it's already raged through society for a considerable amount of time," Wills said. "There are people who will have these lingering presentations and they will want answers. And so even if COVID-19 is not a problem or it's less of a problem a year from now, all of the people who've been affected by it up to that point deserve to be treated fairly and to to have their condition investigated so that we can at least provide some level of care. The other piece, of course, is that when we're evaluating chronic complications of infectious disease, there's a sense that it's going to dovetail, it's not going to be fully unique to COVID-19. This is going to help propel research into chronic fatigue syndrome, fibromyalgia, chronic Lyme disease, none of which are going to go away with a COVID-19 vaccine." #MyalgicEncephalomyelitis #LongCovid #LymeDisease https://www.cbc.ca//university-of-guelph-covid-19-long-hau

CDC Awards Medscape Education Contracts to Develop Medical Education Programming Addressing Major Public Health Needs Press Release from WebMD Health Corp. 10.11.20 Medscape, the leading source of continuing medical education, clinical news, health information, and point-of-care tools for health care professionals has been awarded three contracts by the Centers for Disease Control and Prevention (CDC) Division of Cancer Prevention and Control and the National Center for Emer...ging and Zoonotic Infectious Diseases (NCEZID). Programs will focus on Cancer, Mold Infections and Chronic Fatigue Syndrome. "Chronic Fatigue Syndrome: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MECFS) is a severe, long-term illness. People with MECFS are often unable to engage in daily activity due to severe fatigue. COVID-19 brings a new concern to these symptoms, as Dr. Anthony Fauci noted that a consequence of COVID-19 is post-viral syndrome which includes fatigue and difficulty concentrating. Medscape Education will bring these concepts to life through an interactive roundtable discussion designed for physicians, nurses and pharmacists." Sounds like good news...but we'll have to see. #MyalgicEncephalomyelitis #COVID19 https://www.prnewswire.com//cdc-awards-medscape-education-

Waking Up to Breaking News... 10.11.20 The long awaited updated NICE guidelines on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been released overnight. ... The draft guideline applies to England and Wales but is known the world over. The document recognizes there is no ‘one size fits all’ approach to managing symptoms and stresses the need for a tailored, individualized approach to care that allows joint decision making and informed choice. Because of the harms reported by people with ME/CFS when people exceed their energy limits, the draft guideline says that any program based on fixed incremental increases in physical activity or exercise, such as graded exercise therapy (GET), should not be offered as treatment. Instead, it highlights the importance of ensuring that people remain in their ‘energy envelope’ when undertaking activity of any kind. The draft guideline also emphasizes that cognitive behavioural therapy (CBT) is not a treatment or cure for ME/CFS. However, as a supportive therapy which aims to improve wellbeing and quality of life, the draft guideline says CBT may be useful in supporting people who live with the illness to manage their symptoms. Input from ME organizations in response to the guidelines is already underway. The final version to be published next spring could look very different. One thing is for sure...this draft is unquestionably another big blow to the PACE trial! Much more to come. The Announcement: https://www.nice.org.uk//nice-draft-guidance-addresses-the The Consultation Process: https://www.nice.org.uk//gid-n/consultation/html-content-2 The Draft: https://www.nice.org.uk//gid-ng1/documents/draft-guideline Detailed Discussion on Science for ME Health Forum: https://www.s4me.info//nice-me-cfs-guideline-draft-publis/ #MyalgicEncephalomyelitis #NICE Guidelines

Doctors Examining Possible Link Between Chronic Fatigue Syndrome and COVID-19 From ABC News & MSN News 07.11.20 (Posted in its entirety to bypass a paywall.)...Continue reading

One Day Left... $3,500.00 to go! With so little left to raise, we're sharing this crowdfunding page so David can continue his invaluable work for the international ME community. ... David highlights the work that's kept him busy over the past year, including a review of the DNRS program out of Canada. We recognize many disabled in our community are struggling even further during this pandemic. Please contribute only if you're able. Sharing this message during the final hours of the campaign can also help. Thanks. Crowdfunding and Highlights: https://crowdfund.berkeley.edu/project/22602 Review of the DNRS Program: https://www.virology.ws//trial-by-error-what-is-the-dynam/ #MyalgicEncephalomyelitis David Tuller

The Negative Impact of the Psychiatric Model of Chronic Fatigue Syndrome on Doctors’ Understanding and Management of the Illness Dr. Keith Geraghty 28.10.20 Conclusion: ... The psychiatric BPS model of ME/CFS may negatively bias how physicians approach the illness, with doctors directed to view patients’ complaints as manifestations of psychological distress, rather than physical symptoms that require medical investigation or intervention. This finding may help explain why many ME/CFS patients feel disbelieved and unsupported after seeking medical care. Psychiatric theory fails to acknowledge or incorporate a substantial body of evidence showing biological deficits associated with ME/CFS. Medical trainees and physicians need more training and clinical exposure to ME/CFS patients, armed with better awareness of misleading and unproven claims associated with the BPS model. Abstract: https://www.tandfonline.com//10.1080/21641846.2020.1834295 Full Paper: https://sci-hub.se/h//doi.org/10.1080/21641846.2020.1834295 #MyalgicEncephalomyelitis #BPS