M.E Awareness 2022: 10 things I wish people understood about M.E.

M.E Awareness 2022: 10 things I wish people understood about M.E.

1. Despite the other common name for the condition (Chronic Fatigue Syndrome), fatigue is not the only symptom of this illness. M.E/CFS is a multisystem disease and affects various areas and systems in the body.  There are a number of symptoms that affect someone with M.E; widespread pain, stomach issues and food intolerances, sleep disturbance, post-exertional malaise, autonomic dysfunction, cognitive issues, sensitivity to light and sound, orthostatic intolerance, tachycardia, flu-like symptoms, swollen glands etc.  That’s just some of the symptoms!  M.E is so often thought of as ‘just a fatigue disorder’ and that’s wrong, it influences multiple areas of the body. Also, worth mentioning here is that fatigue isn’t just tiredness.  Fatigue in a person with M.E isn’t just ‘being tired’; it’s full body exhaustion, not being able to physically function because your body can’t produce the energy.  Not being able to eat, move around, wash, and sometimes even not being able to get up to go to the toilet.  It’s an exhaustion that leaves severe M.E sufferers completely bedbound.  It’s not just tiredness, it’s overwhelming exhaustion that makes functioning impossible, it’s debilitating and very life-limiting, it shouldn’t be trivialised or underplayed.

2. M.E is a fluctuating condition.  That means symptoms can change on a day-to-day basis and the severity level of symptoms can also differ from day-to-day or week-to-week.  For example, one day I might be able to walk my dog for half an hour or go out and do some shopping, but the next day I might be so overrun with pain and exhaustion that I can’t get out of bed or manage my own personal care.  It doesn’t just differ day to day either; M.E can leave me housebound for a whole month and then I might have a good week where I have the energy to get out a few times and exercise or socialise.  There are varying levels of M.E and sufferers can go from mildly affected to severely affected or the other way around.  Some M.E sufferers experience years of hardly any symptoms but then relapse and are severely affected again.  It’s not a predictable disease.  There is also the issue of post-exertional malaise which refers to the consequences of using energy.  M.E sufferers experience a kind of payback for activity, it’s hard to understand if you’ve not experienced it.  It’s a flu like feeling after activity.  So, I might have the energy to go out, socialise and go shopping but within 24 hours I will experience a crash for expending that energy and it could leave me bedbound for days.  It’s why M.E sufferers must be very considerate about what they use their energy on, because doing so might cause a huge flare up of symptoms that lasts 48 hours or more, which leaves us unable to function normally.

3. There is no cure or definitive treatment for M.E.  I can’t just take a ‘magic pill’ and make M.E disappear.  There have been various treatments recommended for people with M.E and some of these have been more harmful that helpful.  The important thing to note is that M.E is an under-researched disease with no definitive cause or explanation for why it develops, so it’s about managing symptoms rather than treating the root of the problem.  So, management of some of my symptoms are done by medication, pain killers, antidepressants, stomach tablets etc.  I’ve undergone a few courses of CBT (Cognitive Behavioural Therapy), been to physiotherapy, had lidocaine infusions, done acupuncture sessions etc.  But all of this doesn’t fix M.E, it doesn’t make it any less debilitating; it’s a crutch not a cure.

4. There is no time limit with M.E.  There’s no window of recovery or limit to the illness.  M.E can affect some people for 6 months; it can affect some people for 6 years and it can affect some people their whole life.  I’ve been on the receiving end of questions like: “well, how long are you going to be like this?” and “shouldn’t you have recovered by now?”.  There is no ‘time’ I should feel ‘better’ by, M.E isn’t governed by a time limit, it affects everyone differently and for various lengths of time.  It’s important not to make someone with M.E feel like they haven’t ‘recovered’ quickly enough or put some made up time limit on their condition.  M.E has no expiration or ‘best before’ date, it’s not a condition that will miraculously disappear after a few months.  The body takes as long as it needs, M.E doesn’t just expire.

5. M.E makes planning and socialising very difficult.  M.E doesn’t notify me when it plans to have a good day or bad day; I can’t predict how I’m going to feel tomorrow, let alone next week.  As a result, I have to cancel a lot of my plans last minute and I hate it.  But it’s not out of laziness or rudeness.  I’m not cancelling because I’m being rude or can’t be bothered.  It’s worse with social plans, I hate cancelling on friends and family.  I hate to think that they believe I’m just being antisocial or blowing them off.  The reality is; I’ve woken up that day and the energy just isn’t there, the fatigue is too severe for me to wash, get dressed or even get out of bed.  I might not always make that clear because it’s embarrassing to admit and I’m ashamed to reveal that weakness.  Like I said in my first point, M.E affects multiple areas of the body; but it also affects multiple aspects of life and socialising is one of these.  It can have a huge impact on mental health, not being able to see friends or family, not being able to attend events or stick to dates is devastating.  I wish more people understood that cancelling isn’t me being rude or neglectful, it’s out of necessity because I have an unpredictable disease.  Just know that someone with M.E might cancel on you, but it doesn’t mean they don’t want to see you or aren’t interested. Support and friendship are extremely important to someone with M.E because it’s a very isolating illness.

6. While advice and suggestions on my M.E are appreciated when they come from a place of care and concern; judgements and criticisms of how I manage my illness are not appreciated.  I’m sure the majority of M.E sufferers have heard the typical: “you just need to get out more”, “you just need to do more exercise” and “you just need to try harder”.  I can’t begin to express how upsetting those types of comments are.  If you haven’t suffered with M.E or had any experience with the condition, then it’s hard to understand how it affects someone with M.E, so be considerate when making comments and giving advice.  There’s a difference between constructive suggestions and unhelpful criticism or judgements on how that person with M.E manages their illness. For example, telling me “You just need to get out and exercise more, get some fresh air” isn’t helpful to me because I’m not choosing not to do those things, my illness makes it extremely difficult.  All that comment does is make me feel lazy and ashamed and more frustrated with my illness.  Getting outside and being active is so beneficial for mental health when it comes to living with M.E but it’s not going to make me ‘better’ and suggesting it’s that easy just trivialises my suffering.  Instead try encouraging and supporting someone with M.E to do these things.  My Mum is a pro at this, when she realises I’ve been stuck inside a lot, she suggests we go somewhere for a short walk and makes it easier for me by bringing fluids, a camping chair and; just makes it a positive thing rather than just criticising me for not trying hard enough to get out.  Advising someone with M.E is about support and understanding, not just pointing things out and telling them to change how they cope.

7. Sleep doesn’t make any difference to someone with M.E.  A ‘good nights sleep’ is not going to miraculously cure my fatigue; because like I’ve said, fatigue isn’t just tiredness.  A very prominent symptom of M.E is unrefreshing sleep.  When the average person sleeps, their brain and body go through a sort of, restoration process.  The body recovers from the days activities when you go to sleep at night.  But with M.E this doesn’t happen.  I wake up just as exhausted as when I went to bed the night before.  People with M.E suffer with nonrestorative sleep which basically means, the body doesn’t recover normally during sleep, it doesn’t restore energy properly.  So, I can wake up with absolutely no energy even though I’ve not done anything yet, I don’t wake up feeling refreshed and ready for a new day.  It’s an ironic aspect of M.E that I sleep so much yet don’t feel any relief from sleeping.  Someone with M.E might have to sleep during the day for example, but that sleep won’t fix most of their symptoms.  For me, my mental and cognitive abilities begin to decline very quickly in the afternoon, I start to lag and struggle to stay awake or function so I will have a nap, and although it helps short term, physically it doesn’t change my symptoms. It doesn’t matter if I sleep too much or not enough, I still feel the same exhaustion. 

8. M.E can affect anyone, there is no criteria for this disease.  M.E can develop in a completely fit and healthy person, it doesn’t just affect people who may have other health issues. Some people can identify a trigger; for me it was glandular fever but in some people it just develops over a period of time with no clear cause. There is a misconception that M.E only develops in people who already have certain health problems but that’s not the case. M.E doesn’t just affect a certain type of person, it could develop in someone with previous illnesses or it could develop in someone who’s never been seriously ill and is in peak health.

9.  M.E is not a psychiatric disease!  M.E is too often put down to psychiatric issues and labelled as a mental illness.  This is false.  M.E is classified by the World Health Organisation as a neurological disease. This is because of the number of neurological symptoms an M.E sufferer experiences; autonomic nervous system dysfunction, cognitive dysfunction, hypothalamic dysfunction, sensory disturbance etc.  The misconception that M.E is a mental illness, or a psychiatric issue comes from very outdated opinions and ignorance.  This hasn’t been helped by the fact that cognitive behavioural therapy was flagged as a treatment option for M.E for so long.  While someone with M.E might also suffer with mental health problems, these are two different health conditions.  So many people who suffer with M.E still experience doubt that M.E is real because they are told: ‘it’s all in the mind’.  It’s a horrible misconception and can be really distressing for someone living with M.E; to be told their physical symptoms aren’t real.  For so long, people with a diagnosis of M.E were referred to psychiatrists and I still see it happen now, it’s just ignorance.  M.E is a physical, neurological disease and it’s not something that can be cured with psychological therapy or antidepressants.

10.  There’s no diagnostic test for M.E.  A lack of research in M.E in the past has meant, there isn’t a definitive marker associated with diagnosing M.E.  When I was going through the diagnosis process, a lot of people said: “can’t you just have a blood test to confirm it?” and it was frustrating.  It almost makes it seem like there’s no proof and people then wrongly label the M.E symptoms as psychological.  Diagnosing M.E is done by ruling out other conditions with the same symptoms, it’s a process of elimination.  As a result, it can take a long time to be diagnosed and this can lead to the misconception that it’s not a real, physical illness.  The truth is, there’s just not enough research to produce a definitive test for M.E, I hope that this is something that will change soon, as more research is undertaken.  But just because there is no particular blood test or scan that can identify M.E, doesn’t mean it isn’t a real, debilitating illness. 


6 thoughts on “M.E Awareness 2022: 10 things I wish people understood about M.E.

  1. Thanks for sharing this, a really comprehensive list. I’m lucky that my ME is mild and I’m able to work part time but it still affects every area of my life. Thanks for raising awareness. Hopefully we will get more investment in research soon.

    Liked by 1 person

  2. Our friend Julian pointed me to your article and, hooray – you did such a wonderful job articulating all of these conundrums.

    Keeping it handy to send to people when I feel the need to “explain everything that’s going on“.

    Looking forward to digging into more of your dispatches.

    Regards from a cottage in Japan

    Liked by 2 people

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