On the Air - two podcasts on ME with Amy Mooney

Sly Saint

Sly Saint

Senior Member (Voting Rights)
"Amy Mooney, MS, OTR/L, is an occupational therapist who knows first-hand about the role of caregiving and about Myalgic Encephalomyelitis, or "ME," as the mother of a child with this condition. ME is also referred to as Chronic Fatigue Syndrome (CFS), Myalgic Encephalopathy, Post-Viral Fatigue Syndrome, and Chronic Fatigue Immune Dysfunction Syndrome.

Amy has an undergraduate degree from Loyola University in Chicago and a Master's degree in OT from Rush University Chicago. She is a retired Peace Corp volunteer and has worked as an OT in a variety of pediatric settings, including schools, early intervention/home health, outpatient, and private practice. Amy is the mother of 3 school-aged children including a 12 year-old daughter who has ME. Amy is interested in increasing awareness about ME, especially in the medical community, and hopes to inform fellow OT practitioners about how they can support the care and provide treatment for people with this condition."

http://www.ontheair.us/podcast1/episode-22-up-close-with-myalgic-encephalomyelitis-me-part-1

"Amy Mooney, MS, OTR/L, our guest for Episode 22, is back to continue the discussion about Myalgic Encephalomyelitis, or "ME," through the lens of an OT practitioner and as a mother of a child with this condition. On this episode, Amy talks about the distinct role of occupational therapy in working with individuals with ME, and she calls for a shift in thinking that is sure to resonate with OT practitioners and others interested in and involved with ME."

http://www.ontheair.us/podcast1/episode-23-more-about-myalgic-encephalomyelitis-me-part-2

full details here: http://www.ontheair.us/podcast1

I have only listened to part of part one but so far is very good; explaining about the 'rehab' her daughter was prescribed only made her worse and how her idea of what the disease was has changed. The person interviewing has seen Unrest and talks about the effect it has had.
 
good find Sly I wonder if this podcast is listened to by OTs in the UK at all??

the music at the beginning is loud - Im not really sound sensitive but I had to turn it down quickly- the sound levels on the interview are ok so you might have to shift it back up again quickly too

listened to the first one and it was good
 
Should have pointed out that Amy Mooney is the mother of Lizzie Mooney:
http://www.asbmb.org/asbmbtoday/201803/Feature/ME/

on that site found this:
An eight-decade mystery
Key moments in myalgic encephalomyelitis history
1934: The earliest case of ME is observed and formally recorded as an outbreak of poliomyelitis among staff at the Los Angeles County General Hospital.
1956: The Lancet recommends the name “benign myalgic encephalomyelitis” to describe an outbreak in London; patients have neurological symptoms, myalgia and a number of other symptoms following an infection.
1969: The World Health Organization classifies the disease for the first time as “benign myalgic encephalomyelitis,” listing it as a neurological disorder.
1970: Two psychiatrists in the U.K. review reports of 15 outbreaks of patients with similar symptoms and deduce that the results are due to hysteria, as they see no physical signs of disease.
1978: An international symposium held at the Royal Society of Medicine drops the term “benign,” as it is not commensurate with symptoms reported by patients.
1984: Recorded instances are sporadic around the U.S. until the Los Angeles Times reports an outbreak on the shore of Lake Tahoe. Before the report, the Centers for Disease Control and Prevention sends two epidemiologists to investigate a severe flu-like illness with persistent symptoms. The epidemiologists return empty-handed just days later.
1988: The CDC names the disease now known as ME a “syndrome of chronic fatigue.”
1989: Two British studies attribute ME to a psychological disorder and a self-perpetuating lack of exercise, self-representing an investigative trend by psychological and psychiatric researchers.
1990: The CDC receives more than 2,000 calls per month from the public requesting information about a flu that never goes away, according to journalist Hillary Johnson.
1991: Researchers from the Wistar Institute in Philadelphia propose the retrovirus HTLV as a causative agent in a paper published in the Proceedings of the National Academy of Sciences. A blinded follow-up study by the CDC fails to replicate their results.
1991: The National Institutes of Health’s Stephen Straus publishes studies stating ME is a psychological disease and shares his findings at scientific talks and hospital grand rounds around the world. He refuses to comply with Freedom of Information Act requests by reporter Johnson to see his research data. He refuses to release information on how funding for disease research is spent.
1996: Hillary Johnson publishes her book, “Osler’s Web,” about a nine-year investigation into the ME/CFS research community. She alleges that research has been stifled and funds misused.
1996: Congress requests that the General Accounting Office and the Department of Health and Human Services investigate claims made in “Osler’s Web.” Both investigations verify the book’s contents.
1999: The ME/CFS Working Group is established at NIH.
2009: An article published in Science describes a link between murine leukemia virus XMRV and ME/CFS. The study cannot be replicated and is retracted in 2011.
2011: The PACE trial reports in The Lancet that cognitive-behavioral therapy and graded exercise therapy can benefit ME/CFS patients. Patients object to the methodology and results, organizing a petition and FOIA request for release of anonymized data.
2015: David Tuller publishes a lengthy methodological critique of the PACE trial.
2016: Independent analysis of data from the PACE trial by American biostatisticians in collaboration with patients fails to support the study’s conclusions.
2016: Advocates and patients organize across the country under the banner of #MillionsMissing to demand increased funding. Advocates and patients who are well enough to attend speak about how the disease has affected them, hang photos of homebound patients and set out pairs of shoes to represent patients who are too sick to join. Demonstrations expand to 25 cities worldwide in May 2017.
2017: The documentary film “ Unrest” is released, chronicling the life of its producer Jennifer Brea, an ME patient.
2017: The NIH announces it will award four grants totaling more than $7 million to establish centers for ME research.
2018: If high estimates of prevalence are accurate, up to 8 in every 1,000 Americans have ME. Hillary Johnson referred to ME in the 1980s and ’90s as an epidemic; she now calls the disease endemic.
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have listened to both podcasts;
NelliePledge said:
I wonder if this podcast is listened to by OTs in the UK at all?
Click to expand...
highly unlikely but not sure if they would agree given the NICE guidelines. Another reason (as if we needed one) to remove CBT/GET asap.
 
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