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 wider world is catching up in terms of trying to understand this seriously debilitating neurological disease that affects 17-30 million people worldwide (250,000+ in the UK). In fact, when Long Covid first came about, there were many reports of ‘post-viral illness’ being a new phenomenon. The name Myalgic Encephalomyelitis was created in the 1950s and most cases of M.E are triggered by viruses. M.E is mostly a post-viral illness. The M.E/C.F.S patient community, charities, advocates, and Stripy Lightbulb CIC were warning about a possible increase in cases at the very start of the pandemic, but we were not listened to.
We have been able to see what search terms the UK public has been using this evening (2nd February 2021) to find information about M.E/C.F.S. These search terms will have also been used around the globe but this blog is specific to the UK. We are pleased to see that the vast majority of questions have been covered within our training, we are not missing any important information that the public or professionals want to know. Obviously, we do not know whether these searches were done by professionals or for personal use but we have both e-training for professionals (healthcare, business, education) and an information resource for patients who are newly diagnosed with ME/CFS or are mid-diagnosis but have been told that ME/CFS is a possibility by their GP/Doctor. Our online learning and patient resource are fully automated and accessible from anywhere around the world. Location is not a factor in not being able to participate in our training.
Just some of the 323 questions asked were:
- Can ME/CFS kill you?
- Can ME/CFS be cured?
- Can you catch ME/CFS?
- Who can diagnose ME/CFS?
- Can you recover from ME/CFS?
- Can you test for ME/CFS?
- What is ME/CFS?
- What are ME/CFS symptoms?
- What is severe ME/CFS?
- What does ME/CFS stand for?
- What causes ME/CFS?
- How to beat ME/CFS?
- Doctors who treat ME/CFS?
- How to explain ME/CFS to friends?
- How is ME/CFS diagnosed?
In another visual, we can see that there are a number of questions specifically linked to Covid19. We believe this is due to the growing number of Long Covid patients now being diagnosed with M.E/C.F.S after being sick 6+ months after acute infection and meeting M.E/C.F.S diagnostic criteria. The messaging that Covid19 is triggering M.E/C.F.S is not fully in the public domain yet, it needs to be. It is estimated that Covid19 will lead to an increase of 10 million ME/CFS cases worldwide.
M.E/C.F.S was already a global health crisis pre-Covid19, it will truly be an emergency by the end of the pandemic. An emergency without treatments or cures for the disease. It is a disease that has been widely neglected and ignored by governments around the world for decades in terms of research funding and support for patients, we will have to wait and see if this will change in the near future.
Here are some of the ‘related’ M.E/C.F.S search terms:
- ME/CFS Covid
- ME/CFS Coronavirus
- ME/CFS Covid vaccine
- ME/CFS NHS
- ME/CFS disability benefits UK
We would suggest that most of these keywords have been entered by newly sick patients and/or their families wanting to know if their Covid19 symptoms have triggered M.E/C.F.S and what their future options look like. We also know that M.E/C.F.S patients are unsure whether to take the Covid19 vaccine as it is understood amongst the patient community that external stressors, including vaccines, can cause an exacerbation of symptoms. Patients are having to weigh up the risks of catching Covid19 against the risks to their chronic illness by taking the vaccine. It’s a rock and hard place situation.
As we have already stated, this is a health emergency in waiting, we would encourage as many people as possible to become educated about the disease. If you are a professional who works in healthcare, business, or education and have a duty of care over patients please do consider signing up for our e-training. 3 hrs of learning for 3 CPD points. Pre-Covid19 M.E/C.F.S affected 1: 500 people. M.E/C.F.S was not rare. M.E/C.F.S is a unique illness and patients require specific support in working, learning, and healthcare environments. They need YOU to learn about their disease.
Courses are currently discounted during the pandemic (£12) as our priority has shifted to educating as many people as possible during a time when many are experiencing financial restrictions.
Group licences are available.
Sign up today – www.stripylightbulb.com
Data from – answerthepublic.com.