Temple of Peace and Health, Cardiff – Here we come!#
As a Community Interest Company that works for the benefit of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E/C.F.S) community, we are delighted to be holding our FIRST EVER face to face CPD accredited training event.
We were founded, and are managed. by a person who lives with M.E/C.F.S and we were created as an ONLINE training company because that is the ‘best fit’ business model for someone living with M.E/C.F.S to manage day to day. Managing Director Sally Callow does not have the energy required to deliver face to face training regularly.
However, at the same time, we recognise that many people prefer face to face training and some even (no idea why) believe that online training is somehow ‘less than’. Unfortunately with M.E/C.F.S, the experts are often patients themselves and so the RARE available training (mostly for healthcare) is online.
So, we are breaking the mould (with difficulty)!
This Cardiff training day will be our pilot to see if face to face training is a possibility for our Company, but also to see if there is enough interest in ‘the real world’ to warrant holding events. We know the need is there for an improved knowledgebase amongst professionals from a patient perspective but we need to see if our messaging since 2018 has been hitting home.
Be in no doubt – COVID 19 has increased the need for training on M.E/C.F.S exponentially worldwide.
We are immensely grateful to the National Lottery Community Fund – Wales for recognising the benefits that learning about this disease will have on the people of Wales (patients, organisations and professionals). Thank you. This £6000 award will lead to positive change for M.E/C.F.S patients across Wales. We strongly believe that education is the ONLY way forward for this neglected and widely misunderstood vulnerable patient group.
Based on the prevalence estimate percentage of 0.4% of the population (low estimate as the percentage ranges from 0.4 – 0.7% depending on the research used), we estimate there to have been 12,680 M.E/C.F.S cases in Wales prior to the pandemic.
It is now known that around half of Long Covid cases meet the diagnostic criteria for M.E/C.F.S. and we now estimate there to be around 30,000 patients in Wales.
We educate from the patient perspective. What does that mean? What are the wider factors that impact the patient experience of the disease? What is the diagnostic process? How does M.E/C.F.S present? Stigma. What challenges does M.E/C.F.S present within healthcare, learning, and working environments? How can these challenges be overcome to benefit the patient, professional, and organisation?
Since we were founded in 2018, we have been told MANY times that M.E/C.F.S is ‘niche’ and organisations/professionals do not need to learn about this specific disease because they have had wider disability training. If that was the case, why is off-rolling an issue in some schools? Why are some students leaving education without meeting their potential? (M.E/C.F.S does not impact intelligence) Why do many people living with M.E/C.F.S end up leaving employment unnecessarily due to inadequate care and support? Why are there so many complaints submitted about poor care and support within healthcare settings? Why are some patients harmed by inappropriate advice from medical professionals? These are just a few of the issues related to M.E/C.F.S – All of these issues can be improved with education.
One key point – The poor knowledgebase on M.E/C.F.S is why Long COVID took so many completely by surprise. Half of Long COVID cases meet M.E/C.F.S diagnostic criteria.
Please learn about M.E/C.F.S from M.E/C.F.S experts.
If you live in Wales, are a professional and have a duty of care over M.E/C.FS patients in Wales, please do sign up to attend our training event.
If you are unable to attend due to location/availability – our online training has the same CPD accredited content and is available 24/7 internationally for anyone with internet access and a method to pay online (though currently ‘Pay What You Can Afford’ due to the cost of living crisis). We have courses specific to healthcare, education, and employers.
We can’t wait for the 26th April – see you then!