This will be an unusual blog post for Stripy Lightbulb CIC in that I am writing about an issue using my own recent personal experience.
As a social enterprise, Stripy Lightbulb CIC has been very pleased to see recent announcements from the National Institutes of Health and Care Excellence and Secretary of State for Health and Social Care, Sajid Javid MP about M.E/C.F.S and the need for change. As an online training provider of M.E/C.F.S training we have always strongly believed, since 2019, that education is the only way patients can progress in terms of receiving adequate and appropriate care. We have also always said that there is a disconnect between the support and care professionals believe they give M.E/C.F.S patients and the level of support patients feel they are receiving. This needs to change.
As a M.E/C.F.S patient of over 15 years myself, I have felt the full impact of this need for an improved knowledgebase personally. It took over two and a half years to get my own diagnosis of Chronic Fatigue Syndrome. Whilst diagnosing me, the locum GP said ‘Think yourself lucky you only have CFS, M.E is much much worse’. I would suggest that anyone who has participated in our training would know what a ridiculous statement that was (please sign up if you don’t understand what is wrong with that statement). The complicated history behind the name is explained in full in our training.
I meet all criteria for M.E, something I only found out when I became an M.E/C.F.S campaigner in 2014. I have self-identified as a M.E patient since 2014, my doctors continue to call my disease C.F.S. Not even M.E/C.F.S, just CFS.
Early this week, I headed to my first ever ‘M.E/C.F.S specialist’ appointment (there are only a couple in the whole of the UK – private. None on the NHS), it was 15 years in the making. I had to endure an 8 hour round-trip (driven by a family member – I cannot drive/concentrate for that length of time) to speak to a medical professional who truly understands the disease I have suffered from since 2006. I had an hour and a half appointment in which I was told ‘you are highly suggestive of M.E’ (closest you can get to an official diagnosis without a biomarker), diagnosed with Orthostatic Intolerance (OI) (I have had this since 2006 but it has never been acknowledged by my GPs) and given advice on how to manage this particular aspect of my disease. I was asked which symptom was impacting my daily life the most at the moment. OI means I am finding it increasingly difficult to work sitting upright. This specialist has offered advice re supplements I can take to try to reduce the severity of this symptom. I didn’t arrange the appointment anticipating that I would be given a magic pill or that I would improve/be cured overnight. I went for validation and to see if I could improve any of my symptoms even a little bit to make life a little bit more bearable.
This specialist confirmed that I am ‘highly suggestive of M.E’ by looking at my medical history (started in childhood), and by looking at my extensive list of symptoms. It was that ‘easy’. Once you know what you are looking at/for, it is not difficult to make a diagnosis of M.E (once everything else has been ruled out with tests). Unfortunately, most healthcare professionals have never been taught what M.E is, what the diagnostic criteria are, how it presents, or that M.E is a real physical disease.
This holistic view is what we recommend in our training courses. In the absence of a diagnostic test, medical professionals have to look at the whole patient and use the M.E/C.F.S diagnostic criteria.
As someone with an energy-limiting neurological disease I shouldn’t have to put my body through an 8 hr round-trip in order to see a Dr. who takes my disease seriously. This trip has caused a 4 day ‘crash’, it had a very negative and draining effect on my body and energy levels.
People living with M.E/C.F.S shouldn’t need to do this.
We should have adequate and appropriate care in our clinics and hospitals, wherever we live around the world.
Education is the only way the patient community can progress and the only way that the quality of life of M.E/C.F.S patients can improve.
Time for change.
Due to the cost of living crisis our courses are currently free for those who cannot pay and pay what you can afford for everyone else (applied at checkout). Please sign up today.