Understanding The Need

During the six months prior to launching Stripy Lightbulb CIC last September, I undertook extensive market research and I did a SWOT analysis. As is the case for a majority of businesses I’m sure. However, how many businesses discover that there is no equivalent worldwide? I did. It was my equivalent of Starbucks doing their own market research and finding that there are no other brands worldwide. In my world, M.E./C.F.S. is a global health crisis. In my life, M.E./C.F.S. is everything. It is my health, my income, and my work. M.E./C.F.S. is so common (at least 1 in every 500 people has the condition), I was amazed that no-one else anywhere around the world had thought to create an e-training platform. I was puzzled as to why this was. I now believe that it is because charities and advocacy groups concentrate on research and on the patient community, rightly so, and so educating the wider general public has been neglected, apart from rare workshops for GPs and a few teachers in recent years.

My SWOT analysis revealed the weakness to be that people simply wouldn’t want to pay for training because there are a number of free training sites on a wide range of topics (none on M.E./C.F.S. though). A range of business mentors agreed with that point. I am now wondering if people would understand the need for training and sign up, even if the training was free.

Here’s why –

During my 5 years of M.E./C.F.S. advocacy, I have discovered two different sets of people within the general public. One set of people heard of ‘Yuppy flu’ in the 1980s, don’t know much about the condition, but assume that now, nearly 40 years later, we have progressed as a community and have treatment or a cure. No, we haven’t progressed at all, we still struggle to get research funding let alone have discoveries of treatments or cures. The other set of people think they know what M.E./C.F.S. is and don’t believe it to be a serious condition. They don’t see the need for training. My point to these people is that if only around 5% of medical professionals around the globe receive training on M.E./C.F.S. and if the medical and scientific communities are still, in 2019, arguing about what M.E./C.F.S. is, how can you claim to understand the condition?

M.E./C.F.S. is a seriously debilitating, fluctuating, complex, neurological condition that affects 250,000 in the UK and 17-30 million worldwide. The patient community is waiting; waiting for our condition to be taken seriously, waiting for treatments to be discovered, and waiting for the stigma to be reduced to make living with the condition more bearable. I had the realisation that our situation could be improved greatly with the education of those professionals who have a duty of care over us in workplaces, schools, and healthcare environments. Patients currently experience stigma, disbelief, ignorance in all three sectors.

M.E./C.F.S. patients are so desperate for progress that they become experts on their own condition, myself included. We read every research paper, respond to every request for information from charities about our symptoms in the hope that it will lead to fresh ideas, we also share advice within the community about how to ‘treat’ various symptoms that do not have any officially recognised treatments. The M.E/C.F.S. community is a very inclusive club, we live in a kind of bubble, we even have our own language with ‘spoonies’, ‘crashed’ and ‘payback’. Stripy Lightbulb CIC wants to widen the club’s membership. We want the wider public to get engaged with the subject too, that is the only way we will progress. While it is semi-acceptable for Joe Bloggs the Greengrocer to not understand about M.E./C.F.S, it is not acceptable for an Occupation Health therapist to not know enough about the condition to adequately support staff within the workplace.

I have attended corporate business events as Managing Director of Stripy Lightbulb CIC and have been told by various high-flying business owners that ‘We know M.E. is a global health crisis, something needs to be done’. I know. I’m doing it through education.

By undertaking a Stripy Lightbulb CIC CPD accredited M.E./C.F.S. e-training course, you will be benefiting the M.E./C.F.S. community in 3 ways:

  • Helping us to smash the stigma
  • Helping us to raise research funding (50% of our surplus is going to research)
  • You will be able to adequately support M.E./C.F.S. patients under your duty of care.

M.E./C.F.S. can’t be included within a ‘Disability confident’ label if you haven’t had training on the condition. M.E./C.F.S. doesn’t fit with standard disability practices due to the fluctuating nature of the condition. You need to know and understand that M.E./C.F.S. is a unique disability and requires specific individualistic management from both the patient and employer/teacher/healthcare professional.

I’ve given you loads of reasons as to why you should do Stripy Lightbulb’s e-training, why wouldn’t you?

Take a look >> stripylightbulb.com

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