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 …
During Children in Need 2019, we are raising awareness of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. We are taking this opportunity to highlight that M.E/C.F.S is a global issue, if not a global crisis. There are around 25,000 children and young adults in the UK, statistics as to the prevalence of M.E/C.F.S in all age groups are …
Special Educational Needs and Disabilities (SEND) is a topic we care about at Stripy Lightbulb CIC as children with M.E/C.F.S fall under the SEND umbrella within their learning environment. We have been waiting for this report to be published and are not surprised to read some of the issues that have been highlighted. Extract from …
Today, we are launching our new merchandise range – Don’t assuM.E. Assumptions about Myalgic Encephalomyelitis (otherwise known as Chronic Fatigue Syndrome) are rife, create stigma, and can cause additional problems for the global M.E/C.F.S community. Some of these false assumptions are listed below: Don’t assuM.E that you know what M.E/C.F.S is because you read about …
It is widely accepted that people use Dr. Google to try to diagnose their health complaints, look for advice, or seek signposting for support. However, should Google be used by professionals with a duty of care over Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E/C.F.S) patients to establish what the condition is and how they should be supporting …