Tom Kindlon @disabled.social 95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness.
With ME/CFS 34 years, housebound 29 years.
Health has deteriorated post Covid (March 2022).
Irish ME/CFS Association\* trustee 26 years.
26 publications in peer-reviewed journals.
MEpedia entry which has links to my social media accounts (among other things): https://me-pedia.org/wiki/Tom\_Kindlon
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“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.”
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“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.”
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“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
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"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.
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“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.”
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“ME/CFS deprives individuals of their occupations, relationships, and the ability to receive adequate healthcare.”
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“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
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“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”
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🧵 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
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