Monday 16 March 2015

M.E. Awareness, and the progress that has been made

A post about the progress that the M.E. community has made in recent years, with regards to awareness, education and expression of the illness.


Last year M.E. and Fibromyalgia awareness really seemed to kick off!  Every year on May the 12th my Facebook feed is filled with posts and comments in order to raise awareness of M.E.  However last year was the first time that any of my non-M.E. friends also got involved.  Even better, they weren't doing it because they knew me.  They were doing it because they had other friends who were raising awareness of the illness.  This was the first time that I could legitimately say that I had been reached by M.E. advocacy, outside of my own connection to the illness.  To me this was a real sign of change, and a moment that I know I will never forget!

Obviously a lot more needs to be done to change the public's perception of the illness.  There is still a huge amount of injustice and misunderstanding.  This post is not about softening the harsh reality that is living with a largely unrecognised debilitating illness.  But as someone who has suffered with this illness for a while, I have noticed a small change in the way that people talk to me, (my university were fabulous) and a very small slow change in the way that these things are represented in the media.  Which doesn't mean a diminishment of derogatory articles, but dose mean an increase in media publicising the genuine existence of this disease.

Take for example the sale of books discussing M.E.  When I first became unwell in 2007 naturally myself and my family took to Amazon to try and find books to help us out and provide insight.  There were very few available, and some were seriously dodgy! e.g. bogus remedies and theories written in the 80's!  Now I log onto Amazon and search "myalgic encephalomyelitis" or "ME/CFS" and a whole list is available, the majority written in the last few years, with a huge number written in 2012,13 and 14.  The tide is turning!  This is amazing and something that we need to celebrate in the M.E. community.  I can only be thankful for the incredible progress that has been made in the last 7 years, and of course am proud to say that I have personally known some of the people who have been involved in this!

For those newer to the illness it may seem frustrating that so little is known, and that the public are so ignorant.  It was ridiculous 5-10 years ago when I was first ill, and unimaginable 20 years ago.  We are going through a real time of change and I believe that now, and in the next few years the groundwork is being laid for spectacular change.

The M.E. community is quick to jump on rogue media articles, and false research claims - and rightly so.  However I have noticed that the community are less eager to celebrate positive media and research.  I know that this is due to the fighting spirit that so many of us have.  The same spirit that has go us to where we are; with very little help from others and a lot of bad press to our name.  But it is also good to take stock, and appreciate everything that has been achieved over the past few years.

There are so may positive campaigns these days.  Another thing that stood out to me last year was the Twibbon campaign (where people attached a blue ribbon to their facebook/twitter profile pictures to raise awareness and show support for the condition).  The uptake was relatively small compared to other awareness days.  However this was the first year that there had been a successful social media campaign for M.E! ...I know it will be even bigger next year.  I really do feel that as a community we are beginning to get organised and act as one.  In previous years there have been many conflicting campaigns with different images and a poor uptake.

 With the rise of organisations like Let's do it for ME! and projects such as the independent film Canary in a Coal Mine things are beginning to move along.  Now there is a place for those who want to support the cause to come together.  Something that has never happened before and has been long overdue.  It is a exciting time to have this illness - if I can even go as far as saying that!  It will be even more exciting once we have a cure, or even biological test!  I am at least beginning to be able to imagine this happening  now.  The first step is allowing the community to gain momentum, and interest/support from those who are not affected.    Never has  M.E. awareness been so thought out.  I know that there is still a long way to go, but we are getting there, our future is brighter than our past.

The plans for this years M.E. awareness week are already being put into place.  I'm confident that yet again this year there will be more media coverage than ever before, and that much more people will engage on social media.  It is a given that more money will be raised than ever before, and rightly so!  I'm still riding high on the success of last year!  Will you be doing anything this year to make M.E. awareness week better than ever? 

MEAW 2015: 11th-17th May

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?