Friday, 13 March 2015

What is M.E? Over worked, lazy or neither?

I have heard it said before that people who just get on with things, people who have 'get up and go' are more likely to get M.E.

...I have also heard it said that people who have M.E. just need to try harder.
Is there any truth in either of these points of view and, if so, which one?

The thought process behind the 'get up and go' mentality being a predisposing factor for M.E. is along the lines of this: That often M.E. is caused by a viral infection that never goes away; the early stage of which is called post viral fatigue syndrome (PVFS) - where the body has symptoms of M.E. including extreme fatigue that is not lessened by rest, unrefreshing sleep, post external malaise and symptoms of viral infection.  If this does not clear up after 6 months, very often the patient will be diagnosed with M.E.   There is evidence to suggest that getting sufficient rest during the post viral stage will decrease the chance of developing M.E.  Therefore it is thought that people who have a 'get up and go' attitude are more susceptible to getting M.E.

M.E. is a little known disease, many doctors have not heard of it.  A very limited amount of education is given to patients about the need to rest after a substantial viral infection, and the individual's interpretation of 'adequate rest' will vary.

M.E. can also develop from less noticeable viral infections.  I don't know when I had Glandular fever, but I tested positively for it when I was having my blood work done for my M.E. symptoms.  I often felt well enough to go back to school and thought that I had recovered.  The nature of M.E. is that it causes payback (extreme fatigue etc...) to appear many hours, even days after exertion; the patient does not know that they are doing the damage until it has already been done.  Due to a lack of awareness among medical professionals, patients are often encouraged to go back to work far too soon.  It is often considered that 2 weeks off work is a sufficient amount of time for a patient to recover from PVFS.  Whereas in actual fact they would be better off taking 6 months off!  To a hard working (formerly healthy) mind the idea of taking 2 weeks off work may seem like overkill, extravagant even. Little do they know that this is only a tiny step in the right direction.

The only known way to improve M.E. symptoms is to rest, and avoid overexertion.  The level of activity that will cause symptoms of payback varies from person to person and will change with time.

You cannot snap out of M.E!  Believe me, I've tried! Unfortunately exercise only exacerbates it - a lesson that I have taught myself time and time again, culminating in my recent return from university. This time I was overdoing it on a long-term scale, living too far away from the university campus. The pay back built up a little each day, and eventually resulted in a relapse.

Because of this, and other examples, obviously I do think that that the 'get up and go' mindset can exacerbate M.E. It causes relapses and worsening of symptoms, and therefore draws out the recovery time (if full recovery is even possible - a debate for another day).   However if one person with M.E. has better health than another, it does not mean that the other person has necessarily done anything wrong.  Similarly some people find that their condition improves as time goes on, while others see no change or decline no matter what they try.  The severity of M.E. varies, and affects each person differently.  By far the most important factor in maintaining the general health of someone who has M.E. is to have good energy management, the antithesis of a 'get up and go' mentality!

I do not believe that a state of mind or attitude can cause M.E; there is something deeper going on here in the body, affecting both the immune system and the neurological system.  In turn this affects the hormones, and ultimately other systems and organs and within the body.

It is sad that the most common piece of advice given to people with M.E. is to 'just get on with it', exactly the thing that makes M.E. worse!  Sadly a lot of M.E. patients do not know this, and they will try and endeavor to 'beat' M.E. by sheer force and exercise.  Most GPs are still advocates for the same advice.  Unfortunately the NHS (NICE) guidelines still say that M.E. may have a psychological cause. The official NHS practice is to offer CBT counselling, and Graded Exercise Therapy - in my experience this is basically forcing your body to do more and more until you have a relapse, and have to drop out of the programme, then no one bats an eyelid and pretends that you are the only one who this hasn't worked for. (In America the definition has recently been changed to being non-psychological though, so there is hope!)  Most GP's offer antidepressants once all other options have been exhausted.  I of course do not take them. If you know me in real life, you will hopefully realise that I am far from depressed… remarkably!

M.E. has many other modes of onset other than following viral infection.  It can also be caused by exposure to chemicals and toxins, trauma, major surgery, slow onset (no apparent cause) or occurs during a time of hormonal change such as menopause.  It has so far been found in adults, teenagers and children as young as 2.  M.E. affects more women than men, the true ratio is unknown, but it is something close to 3:1.  A gender ratio such as this is common in immunological illness (M.S. being the most well-known example).  This is because female and male immune systems differ slightly, and so respond to stress differently.  For more information see ME Association or Action for ME.

One thing is for certain, and that's that M.E. is not just being lazy!  It's not a choice, mental health problem or product of burnout.  It's a real biological illness, with many possible triggers, and an incredibly complicated multi system biological mechanism (which we unfortunately do not yet understand).

What do you think about this?  Do you have any experience of M.E?


  1. Such an interesting post Jenny. I completely agree that having a 'get up and go' attitude isnt a cause for ME/CFS. I do think that the tendency to push on and 'get on with things' can exacerbate it though. I tried to keep working for far too long and am pretty sure it made me far far worse. I'm loving your blog makeover by the way- the colours are so vibrant and cheerful! Hope it's nice to be back at home with your health as number one priority. Lots of love xx

  2. Thanks Faye, love your blog too. Your such an inspiration! :) xx

  3. I love this post! I have major brain fog and can never get anything like this out without it making absolutely no sense so well done! :D I'll be sharing this with everyone I can and I know my Nan will enjoy reading it so thank you for helping her understand just that little bit more <3

  4. Thank you so much Laura. What a compliment! It the highest praise when someone wants to reshare your post! I did find it very difficult to write this, and had to get someone else to read over it to check that it made sense and there were no spelling mistakes. I'm so glad that you thought it made sense, because that was something I was worried about! I can completely relate to what you are saying, there have been long periods of my illness where I wouldn't even attempt writing anything like this! It is so frustrating when you can't say what you want to isn't it! At times of extreme brainfog I have often been grateful of other bloggers who have explained what I was going through and put my feelings into words. I'm only too glad to have been able to do that for someone else! <3 I hope you are getting on okay with your new flat. I know things have been tough for you, but you have had a lot of changes in a short period of time, and things will settle down soon. I haven't had the chance to check your blog recently, so don't know what your news is, but I will check it soon! Keep going sister! :) xxx

  5. This is such a brilliant blogpost Jenny, you've explained everything so well!:) x


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