Advocating for ME / CFS , chiari malformation and Long Covid
The Facebook group ‘ OTs for ME ’ was founded in June 2020 by Michelle Loveday Oswald , a keen advocate for the occupational therapy and myalgic encephomyelitis / chronic fatigue syndrome ( ME / CFS ) community .
As an expert through experience and a person with ME , Michelle created the page to raise awareness and share resources about ME and post-viral fatigue syndrome and the role of occupational therapy , after struggling to find accessible resources .
A subgroup of Doctors with ME , it has nearly 200 members globally . She explains : ‘ We are working with Doctors with ME to raise the occupational therapy profile , have contributed to the MECFS NICE guideline feedback about the importance of the occupational therapy role , and are working on a collaboration with ME action in America to produce a working definition document to define terminology used within the ME / CFS and Long Covid field .’
In November 2021 , Michelle was diagnosed with the rare condition , chiari malformation , where brain tissue pushes into the spinal canal ( www . nhs . uk / conditions / chiari-malformation /).
There is an overlap of symptoms between ME / CFS and chiari malformation , but there are clear differences that distinguish the two conditions .
‘ I meet all of the NICE diagnostic criteria for ME / CFS ,’ she explains . These symptoms include : debilitating fatigue ; post exertional malaise ( or post exertional symptom exacerbation , a definition Michelle prefers as the symptoms are more than malaise ); unrefreshing sleep , due to difficulty regulating body temperature , flu like symptoms and restless legs ; cognitive impairment ; orthostatic intolerance ; and postural orthostatic tachycardia syndrome .
Michelle had additional symptoms that were worsening that did not sit within this ME diagnosis . These included : loss of sensation in her feet ; burning tingling pain in her calves ; balance and proprioceptive problems ; muscle pain and weakness ; tinnitus and migraines ; and urine stress incontinence .
‘ This was put down to vestibular dysfunction , migraines , restless leg syndrome and postural orthostatic tachycardia syndrome by rheumatology , cardiology and neurology ,’ she says . ‘ I want to share this to raise awareness of the condition and the importance of accurate symptom history taking and sharing to ensure conditions are not misdiagnosed or missed .’
For resources about post-viral fatigue syndrome and ME / CFS , or if you would like to join the networks , visit www . facebook . com / groups / otsforme or https :// doctorswith . me . The NICE ME / CFS guideline was updated in 2021 https :// bit . ly / 3LHkHvW
Support after Covid study podcasts
In 2020 , Professor Cathy Bulley , Queen Margaret University , led the Support After Covid study , looking into the support required by people who had been unwell during the pandemic ( www . qmu . ac . uk / research-andknowledge-exchange / qmu-research / covid-19 / supportafter-covid-19 /).
To provide practical assistance to participants and other people with similar difficulties , the researchers wanted to develop products based on the research findings , which would provide accessible information regarding sources of support and practical advice .
Many of the research participants described symptoms corresponding to the condition now known as Long Covid , including brain fog , fatigue and problems with memory and concentration . Therefore , the team decided to develop a series of short podcasts , as these could be easily accessed and would not require long periods of attention ( www . spreaker . com / show / support-after-long-covid ).
To create products that would be useful for people who were unwell during the pandemic , Professor Bulley and Dr Eleanor Curnow felt it was important to include people with relevant personal and professional experiences .
During the podcasts , Professor Bulley interviews three occupational therapists who have all had Long Covid . Dr Linda Renton , Dr Jenny Ceolta-Smith and Kirsty Stanley .
The nine podcast discussions provide a unique blend of personal experiences , such as sleep problems , pacing activity and problems with returning to work . However , the speakers are also able to share practical information based on both their professional expertise and knowledge gained in response to difficulties faced during the pandemic .
Kirsty Stanley and Jenny Ceolta-Smith said : ‘ We were keen to get involved to share our combined professional vocational rehabilitation experience alongside our own lived experience , to better support workers with Long Covid , to stay in , return to and leave work well .’
DR ELEANOR CURNOW , Occupational Therapist and
Research Fellow , Queen Margaret University Edinburgh , ecurnow @ qmu . ac . uk @ eleanor _ curnow @ supportafterco1 . Access the podcasts www . spreaker . com / show / support-after-long-covid
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56 OTnews April 2022