Word of the Day – Baffled

I am baffled.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./C.F.S) is not a new condition. The illness itself, under various names, has been around for at least 150 years (Florence Nightingale herself is said to have had an M.E-like illness and was bedbound for part of her life) and was classified as neurological by the World Health Organisation in 1969.

And yet, comprehensive M.E./C.F.S training is not included in disability training in workplaces worldwide.

It’s a common disability, there are at least 250,000 people with the condition in the UK and 17-30 million people are affected by the severely debilitating condition worldwide. There are more than double the amount of M.E./C.F.S patients as HIV/AIDS and Multiple Sclerosis in the UK.

Why is M.E./C.F.S a neglected disability in terms of workplace training? I believe there are a number of reasons for this.

M.E./C.F.S is still ‘medically unexplained’. This is mainly due to the lack of funding into research of the condition. With so few facts and statistics being available it is difficult to train on the specifics of the condition. No one, worldwide, can categorically state the hows, whys, or possible prognoses. That’s true. But, there is so much that can be included in training. Just because there is no definitive answer doesn’t mean an entire patient community should be excluded from disability training. This is why Stripy Lightbulb CIC educates from the human perspective. Whatever economic, social and political arguments are going on around it, the patient experience of the illness remains the same.

There are ongoing arguments as to whether it is a psychological or physical condition. There is too much physical evidence for the condition to be psychological but the arguing is still relentless. Whichever model of illness it is, the patient experience remains the same, the support we require remains the same, the need for education remains the same.

In 2019, the only people who truly understand the illness as the complex, spectrum-like, fluctuating illness that it is are the patients themselves, their families, charities and advocacy groups (often founded and managed by patients) and a small number of scientists and medical professionals worldwide. That’s it. Patients are too lacking in energy to deliver training on the subject, families are too busy caring for their sick loved one, and patients need charities and scientists to continue working for them in terms of advocacy and research and not put limited funds and energy towards training the wider community; though some charities are now starting to deliver rare short half-day workshops – mainly for healthcare professionals and teaching staff..

I get concerned when big corporates tell me that they create and deliver their own in-house training (but do not currently offer M.E./C.F.S training to staff). I have M.E./C.F.S myself (12 years) and have been an advocate for 5 years but I still had to do a lot of research when creating the online courses. What I found online was a lot of inaccurate and harmful information. Fortunately, I know enough about the condition to know what is a reliable information source and what isn’t. A corporate disability trainer would not know what information is reliable. Key point – even the NHS website contains inaccurate and harmful advice and information.

The patient community has so many ongoing battles for our condition to be taken seriously, we need to make sure that any future ‘in-house’ training package is as accurate and informative as it can be. Any training that suggests GET or CBT as ‘treatments’ isn’t fit for purpose.

In my working life, I attended or was aware of many different disability workshops but I never heard of any including M.E./C.F.S as a subject. In 2015, I delivered a 20-minute M.E./C.F.S training session to CILIP professionals during a disability training conference. It was well received and afterward, a handful of attendees came to speak to me. They all said that it was the first time they had ever attended training about M.E./C.F.S, a number of them thanked me because their loved one has the condition.

M.E./C.F.S is a complex severely debilitating, fluctuating, neurological condition that cannot be summed up by a 20-minute add-on to a disability conference.

It’s time for the world of disability training to wake up and realise that by not delivering M.E./C.F.S training you are excluding a large patient community. Around 65,000 M.E./C.F.S patients have a ‘mild’ severity in the UK and are able to work (usually part-time/flexible hours). By not receiving training about M.E./C.F.S, employers are currently not adequately supporting staff under their duty of care as they simply don’t have the knowledge to do so.

Our Stripy Lightbulb CIC e-training is unique, there is no equivalent worldwide. Our courses are filling a huge void in knowledge worldwide.

Take a look https://www.stripylightbulb.com/

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