ME: what you and your school need to know

ME Foggy Dog

Founder of ME Foggy Dog, ME advocate and ME sufferer. I have raised over £10k for ME research since 2014, and am now in the process of setting up a social enterprise that will offer ME training to healthcare, business and education professionals. I don’t ‘do’ medical jargon, and prefer to talk about M.E from a human perspective. I send Foggy around the world spreading love and M.E awareness. Follow Team Foggy on Facebook at http://www.facebook.com/FoggyDog

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Website: www.mefoggydog.org Email This email address is being protected from spambots. You need JavaScript enabled to view it.

Why do you need to know about Myalgic Encephalomyelitis (ME) for the school year ahead? It is the biggest cause of long-term sickness absence in the UK for students and staff. 21,000 children and young adults in the UK have the condition. You will have encountered an ME sufferer in your working life as an education professional, but do you understand what ME is?

To fully support students and fellow staff members achieve their potential, you need to understand that ME is a unique condition. Unlike many other disabilities, ME patients are unable to ‘push through’ or do ‘mind over matter’. Our bodies are lacking the essential life source that is energy. As hard as we attempt to fight against it, our bodies simply don’t cooperate because we don’t have the energy required to function properly.

What is ME? It is an invisible, severely debilitating neurological condition that affects 250,000 people here in the UK and 17-30 million people worldwide, and there is no effective treatment. ME is also known as Chronic Fatigue Syndrome. The name given to each individual patient is purely dependent on who the GP is or where they live in the world. It is exactly the same illness. Personally, I refuse to use the name Chronic Fatigue Syndrome. as it doesn’t adequately represent my condition. Extreme fatigue is only one of over 60 symptoms that come under the umbrella of the condition. In the same way that you wouldn’t call Parkinson’s Disease ‘Chronic Shaking Syndrome’, I don’t believe our condition can be summed up as fatigue.

Symptoms include: post-exertional malaise, pain, cognitive issues, brain fog, memory loss, inability to control temperature, skin rashes, painful glands, and ‘flu-like’ symptoms. ME has a spectrum of severity ranging from mild to severe. This means that it is hard to judge what each individual sufferer is capable of. In addition to this spectrum, ME fluctuates. Our fluctuations can change by the month, week, day and hour. What we can manage at 10am may not be possible at 3pm. We don’t know when these fluctuations will happen, and that makes planning anything incredibly difficult and frustrating. This makes the condition very easy to misunderstand and disregard.

To the best of my knowledge, when a school encounters a student with ME they contact the school’s GP to ask for advice. The problem with this is that GPs receive zero medical training on ME. This was discussed by Parliament in June 2018  MPs agreed that training was urgently needed as students - and the M.E community as a whole - are suffering due to the inadequate knowledge of ME of healthcare professionals.

GPs are currently likely to recommend that students be encouraged to push themselves and attend school. This advice comes from a ‘treatment’ known as Graded Exercise Therapy (GET). GET has been proven to be extremely damaging to the health of ME patients, and the National Institute for Health and Care Excellence (NICE) have declared they are reviewing their guidelines in 2020. GET was debated in Parliament in February 2018, and Ms Carol Monaghan SMP, a former Science teacher, told how “the impact [of GET] on those with ME has been devastating” and her view that “when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century.

GET is currently still recommended on the NHS Choices website. This is the website GPs use when researching ME and advising schools on supporting students with the condition. The ME community as a whole are heaving a sigh of relief that these guidelines are being reviewed, however it is worrying that so many more sufferers will be told to push themselves between now and 2020.

This notion of being able to ‘push through’ has caused students to be expelled, been told they are not allowed to go to the end of year prom, and fail qualifications because of the amount of school absenteeism and lack of appropriate support.

I have been an ME advocate for four years and have spoken at length to headteachers, heads of departments, and teachers who are worried that they are not offering adequate support to their students. Do they send work home? Would the student be able to attend school one day per week to keep up personal contact and relationships? How much work would they be able to cope with? Should they be given extended deadlines?

I can’t offer definitive answers. Only the ME patient can say what they can and can’t manage, and even then they may have unexpected bad days when all symptoms flare and make them bedbound. I have recommended offering a tailored approach. Flexible learning is a necessity, and allowing a student to work at their own pace is the only way they will leave school with qualifications.

I had ME myself aged 13-15. I was never diagnosed but - with hindsight - after contracting ME a second time aged 30, I know I had ME during my school years. Luckily, my school were very understanding and sent work home every week for me to complete. It was extremely difficult, but fortunately I am self-motivated and was happy to work with minimum instruction. I walked away from Secondary school with 9 GCSEs over grade C. I believe that there are many ME patients who are currently in school but are underachieving because their school isn’t as supportive as mine was, and who are having to battle for additional support when they should be concentrating on their health.

Post-exertion malaise is the defining characteristic of ME. Any activity can cause our symptoms to worsen - ME sufferers often call this ‘payback’. Our bodies are paying us back for using energy we don’t have. This could be an afternoon out with friends, or simply sitting and chatting over a coffee. It takes a lot of cognitive energy to hold a conversation; only people with limited energy understand that. Perhaps you have a student in your class whose parent has just called in to say their child is too sick to come to school, but you know they met up with their classmates socially the day before. This would be due to ‘payback’, but it is understandable that many would find it hard to believe that the student was genuinely sick.

It takes an incredibly long time to get a diagnosis if you are an NHS patient (mainly due to waiting lists). Patients undergo years of tests to rule out other conditions before getting a diagnosis. ME is basically what’s left at the bottom of the barrel. You may well have a student who has been ill for over 18 months and has high levels of school absence without knowing what is wrong. This is very common with ME. Our fluctuations and levels of severity make the condition incredibly difficult for GPs to diagnose.

My advice to teachers who this year have a student, or students, with long-term fatigue and long-term sickness absence is: support them, as soon as you can, irrespective of whether they are diagnosed or not. Quick and effective support increases the chances of ME patients going on to recover - or at least be able to maintain - a manageable level of severity. So many students have battled to attend lessons but have ended up making their health worse. Why battle to attend classes to get exams if you are so sick once you leave school that you are unable to work or are bedbound?

You can read more about Myalgic Encephalomyelitis on the ME Association website: www.meassociation.org.uk.

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