🧵
Press release:
“A Better Understanding of #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Could Benefit #LongCOVID Patients”
On the special edition of the journal WORK on #MEcfs & #postcovid
With quotes from Amy Mooney, an occupational therapist
@longcovid @mecfs #OT #OTalk #OccupationalTherapist #CFS #PwME #MyalgicE #CFSME #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC #Covidlonghaulers #longhaulers
1/
2/
“Many people with Long COVID meet the diagnostic criteria of ME/CFS. Long COVID scientists and clinicians could expedite research and care protocols by utilizing information and experiences gained from the ME/CFS community”
3/
“ME/CFS is a multisystem complex disease with the cardinal symptom being post-exertional malaise (PEM); the worsening of symptoms following exertion. The Long COVID community refers to this symptom as post-exertional symptom exacerbation (PESE)” @longcovid @mecfs
4/
“ME/CFS deprives individuals of their occupations, relationships, and the ability to receive adequate healthcare.”
5/
“Patients often describe PEM [post-exertional malaise] as a “crash,” simultaneously feeling poisoned, drowning in cement, having the flu over and over, and being hit by a bus.”
6/
"Access to appropriate medical care and progress in developing treatment have been very slow for ME/CFS patients. This is further complicated by having to fight the stigma of ME/CFS being viewed as a lazy or anxious person’s disease and not as the serious life-altering disease it is.
7/
“However, with the onslaught of Long COVID, more attention has been given to the devastating impact this disease [ME/CFS] has on quality of life. These patients need more qualified care providers who have the most up-to-date research, care guidelines, and the inquisitiveness to solve difficult medically complex cases."
@longcovid @mecfs #mecfs #cfs #pwme #PwMEs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
8/
“The research presented in this special issue demonstrates the importance of early recognition of PEM for symptom management and improved quality of life. It describes a screening method for identifying who has and who does not have PEM and summarizes symptoms of PEM to differentiate people with ME/CFS and a control group.”
9/
“It is the clinician’s role in the care of patients with PEM/PESE to identify the symptoms that most interfere with activities of daily living; assist the patient with prioritizing meaningful and purposeful tasks; and analyze activities for modifications and adaptations.”