Lightbulb Moments: Recent Episodes
Stripy Lightbulb CIC
Learn about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome in informal small bite-sized chunks.You can find much more information about us on stripylightbulb.com. Stripy Lightbulb CIC is a social enterprise (not for profit) in the UK.Educational and informative podcast from Stripy Lightbulb CIC.
Happy anniversary to us!
We had so many plans to bring about social change for the M.E/C.F.S community back in 2018 when we first launched, the pandemic means the problems we were tackling 5 years ago still exist and have grown significantly.
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Stripy Lightbulb CIC works to make M.E/C.F.S 'mainstream'.
What do we mean by that and how do we do it?
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In this episode, we talk about the recent announcement that NHS England has decided to 'deprioritise Long COVID'.
Unfortunately, this is not unexpected with the two main political parties talking about getting 'economically inactive' people back to work. The political argument would be that Long COVID is now costing too much money in terms of research, 'support' and welfare costs.
Now people living with Long OVID will be pushed back to work AND funding into research will be reduced.
M.E/C.F.S history repeats.
We are so sorry that this is happening with #LongCovid too.
Since recording this podcast this morning, a further announcement has been made. We strongly believe that one of these appointments is linked to this deprioritising Long COVID decision. One of these appointments was a key member of the 'research' team behind the PACE trial described as 'one of the biggest medical scandals of the 21st century'. This trial lead to the harm of some M.E/C.F.S patients.
See - https://www.england.nhs.uk/2023/01/nhs-england-appoints-leading-clinicians-to-board/
In this episode, we talk about how our work often involves educating researchers about the need to screen for PEM if their study involves exercise or increased activity.
Having a study 'approved by the ethics committee' doesn't mean anything if the committee does not understand the background of M.E/C.F.S in terms of many medics not believing in it as a disease, knowing how long it takes to get a M.E/C.F.S diagnosis (in the real world), or medics not knowing how to screen for the defining characteristic of the disease - Post-Exertional Malaise (PEM).
There seems to be a big assumption that someone somewhere will have screened for PEM - this is not the case in most instances.
Got questions? Email Sally via info@stripylightbulb.com.
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Thanks for listening!
In this episode, we talk about how M.E/.F.S is known to fluctuate but it is less known that some patients can experience a steady deterioration over time.
Our MD Sally Callow talks about this using her own lived experience.
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Ordinarily, we wouldn't, as a training organisation on M.E/C.F.S, think about training gym instructors /owners about the disease.
Exercise is contraindicated for ME/CFS.
However, 46% of Long Covid patients meet the criteria for ME/CFS (but may still be undiagnosed and under the umbrella label of Long Covid) and are being referred by GPs to gyms and leisure centres for 'exercise-based rehab'. It is believed that up to 70% of Long Covid patients exhibit Post-Exertional Malaise, the key defining characteristic of M.E/C.F.S (though 24% may not have M.E/C.F.S) and the reason why exercise is contraindicated for M.E/C.F.S .
We would encourage gym instructors/owners to participate in our upcoming 'learning activities' as it will reduce the risk for Long Covid / M.E/C.F.S patients.
Please fill in our form if you have any suggestions as to our 'learning activities' content - https://forms.gle/XNkJm6EkiCGszSad8
Sign up to our e-newsletter to see more information about our Exercise and Long Covid/M.E/C.F.S 'training'. Sign up via https://www.stripylightbulb.com/
p.s We don't 'do' lot of medical jargon. We offer evidence-based learning from the patient perspective. All content will be relevant to your working role.
This episode tackles a sensitive but very important subject.
Stripy Lightbulb CIC supports the vaccination rollout as a route out of the pandemic, however we also strongly believe that transparency about harms is vital.
We are happy to give a voice to Kat Gower, an ME/CFS patient who has been harmed by Covid19 vaccination.