Welcome to Stripy Lightbulb CIC’s first blog post!
Our online training platform is launching on 27th March 2019 (Definitely a date to put in your diary. FYI 2 days before Brexit, if that’s easier to remember!). We are currently working hard in the background, creating our amazing e-learning content, and recording our podcast ‘Lightbulb Moments‘. Become a patron and help us to raise even more M.E./C.F.S research funding and learn about the condition in a structured and easy to understand way.
We are currently in the process of contacting various big businesses to highlight the need for M.E./C.F.S. training and explain the benefits to their business of being able to offer adequate support to their M.E./C.F.S. affected staff. It is a fact that everybody knows somebody with M.E./C.F.S, whether that is a family member, friend or colleague. In the UK, M.E./C.F.S affects 3 in every 1000 people and we are an economic burden of 3.3 BILLION per year (statistic from 2014-15). Once you look at that from an employer perspective, big businesses will have a number of M.E./C.F.S. patients under their duty of care. You may wonder why employers need specific M.E./C.F.S. training. The answer is simple. M.E./C.F.S. is a unique and very complex condition that cannot be adequately encompassed within a standard disability policy. If you are a ‘Disability Confident’ employer, are you confident that you can support M.E./C.F.S. patients?
It is a fact that most medical students WORLDWIDE receive zero training on M.E./C.F.S. They learn about the condition ‘on the job’ as they do with many other conditions. Unfortunately, many in the medical profession refuse to believe that M.E./C.F.S. is a real illness. They claim it is psychosomatic or historically ‘female hysteria’. However, I can’t stress this enough, M.E./C.F.S. is a common illness. It’s a condition that can be helped in the early stages with adequate support from healthcare professionals, employers or teaching staff. This lack of education is causing the majority of patients to have an agonising wait for a diagnosis. We are tested for brain tumours, M.S, cancer, thyroid issues…the list goes on and on. This period of diagnosis in the majority of cases takes well over a year. That’s a year of worry for the patient and their loved ones. They have anxiety that they will lose their job as they can’t give an employer an answer as to what is wrong. We get a diagnosis when we have been tested for everything else. M.E./C.F.S. is the rubbish at the bottom of the barrel. THERE IS NO DIAGNOSTIC TEST FOR ME./C.F.S.
Having explained that, maybe you will understand my surprise when some of these large organisations told me that either:
- They don’t see the need for specific training on M.E./C.F.S.
- Their ‘in-house’ training team would be able to develop suitable training
The only people that truly understand M.E./C.F.S are the patients themselves and the few charities that offer support and advice. There are many other issues that have been thrown into the mix: economic: social: political. Could an ‘in-house’ training team really create an M.E./C.F.S. specific training course? The answer in one word. No.
Stripy Lightbulb CIC is managed and created by a person with M.E./C.F.S (12 years) who has been a global M.E./C.F.S. campaigner since 2014. There isn’t much Stripy Lightbulb CIC doesn’t know about the condition in terms of how a patient is affected and the type of support we need from those who have a duty of care over us.
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