We know there is an increased interest in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome at the moment due to the overlapping symptoms of Long Covid and M.E/C.F.S. Obviously, M.E/C.F.S is a disease that we have an immense interest in and are educating professionals about the disease to bring about social change for patients, but most of the …
Stripy Lightbulb CIC has been working hard on a campaign to make the Department of Work and Pensions in the UK aware of the difficulties ‘mild’ (possibly also low-end moderate) M.E/C.F.S patients face in terms of gaining or remaining in employment, and what the alternative means in terms of benefits. One element of this campaign …
To be clear, we are not anti-vaccine and welcome the Covid19 vaccines as part of the pandemic solution. In this blog, we ask how patients can give ‘informed consent’ when so little is known about the long-term effects of the Covid19 vaccine and how the vaccine will affect patients already diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue …
Anyone who follows Stripy Lightbulb on our social media platforms will have seen that we submitted complaints to Good Morning Britain and Ofcom about comments made by Dr. Hilary Jones on 20th August 2020 about Long Covid. To anyone not familiar with the world of chronic illness, and specifically M.E/C.F.S, these comments would have seemed …
It came to our attention yesterday that staff of a NHS Trust in the South of England were not aware that Covid-19 could be chronic in some patients. During a Zoom ‘Community Engagement Forum’ conversation, our MD Sally Callow introduced herself as an M.E patient advocate and Long Covid patient. The other Zoom attendees asked …
What can M.E/C.F.S patients do when M.E/C.F.S is not acknowledged as being a neurological condition by many medical professionals, the M.E/C.F.S patient community is not considered an ‘at risk’ group during a pandemic, but patients are well aware that any virus can have serious implications on their own M.E/C.F.S? Two things have been on our …
This blog is entirely hypothetical but it is a situation that is plausible. M.E/C.F.S can be triggered by a virus. The current COVID-19 outbreak is heading towards being a global pandemic and this got us wondering if this will cause a spike in newly diagnosed M.E/C.F.S patients within the next few years? Or at the …
Stripy Lightbulb CIC’s e-training courses were extensively researched during their creation and we strive to ensure the information contained within them is kept up to date and as accurate as possible given the shortage of facts and figures surrounding the condition and its wider issues. We have taken the decision to not adopt the findings …
As you will no doubt be aware, Stripy Lightbulb CIC attended The OT Show at the end of November 2019. Our stand was certainly a hive of activity and we were very pleased with the number of powerfully positive conversations we had with Occupational Therapists during the two-day event. So many OTs admitted to not …
Why #StripyCiN? This November, Stripy Lightbulb CIC dedicated 2 weeks to educate people about Myalgic Encephalomyelitis otherwise known as Chronic Fatigue Syndrome (M.E/C.F.S) for Children in Need, and, it seems, we were the only M.E/C.F.S organisation to use the opportunity. We did some research, and as far as we can tell, no M.E/C.F.S charity has …