Chronic Fatigue & M.E.

M.E. is one of the most abused diagnoses of the last Century and the disease is definitely the most misunderstood, neglected and fought-over of our time.  For many years I’ve avoided the politics of M.E. because of any topic it’s the one that can make my blood boil in a nano-second and the stress isn’t good for my health.  Having said all that, it’s still worthy of a post (but I’m not going to make a habit of it).

The reason it’s worth a post is that many of the people I’ve come across over the years with a variety of other diseases, eg. Ehlers-Danlos, Lyme, Lupus, Sjogrens, Coeliac and many others, were initially diagnosed with Chronic Fatigue Syndrome before the real cause for their fatigue was found and their diagnosis was changed.  Over recent years M.E. has been reclassified as CFS and the diagnostic criteria watered down to such an extent that anyone with unexplained chronic fatigue whose standard blood tests come back normal is labelled as having CFS.  It’s wrong on so many levels.

When I was first diagnosed with M.E. in 1994 I’d barely heard of it (there was no internet then so access to information was much more local and limited).  I was just extremely fortunate that my GP was the one Doctor in the practice clued up on the disease, which was as rare as hen’s teeth back then.  As I had an obvious viral onset she first diagnosed me with post viral fatigue syndrome, and when I hadn’t recovered after 6 months this was changed to M.E.  I had all sorts of investigations and blood tests which were all clear, and my symptoms were classic M.E.

There have been several sets of diagnostic criteria over the years used to diagnose M.E., which I’m not going to go into – if you’re interested just Google them.  When I was diagnosed you had to have the following:

  • Viral onset of symptoms.
  • Post-exertional malaise.
  • Post-exertional fatigue, with delayed onset (often by 24-72 hours) which persisted for several days following activity and was unrelieved by rest.
  • Fatigue which curtailed the activities of normal life by at least 50%.
  • Unrefreshing sleep (understatement of the century!)
  • Cognitive dysfunction: ‘brain fog’, poor short-term memory, problems with information processing and problems with concentration.
  • There were also minor criteria which had to be present, such as new onset sleep disturbance, headaches, pain, nausea, paresthesia, sore throat, tender lymph glands, chronic flu-like symptoms, orthostatic intolerance and several others.
  • Symptoms had to have been present for at least 6 months and all other causes for the symptoms had to be excluded.

However, as I’ve previously stated, the past 18 years has seen the diagnostic criteria change and the illness re-branded as Chronic Fatigue Syndrome.  The cardinal feature of post-exertional malaise is now gone, and the emphasis is on fatigue.  Not the classic post-exertional and delayed onset fatigue of M.E., just chronic fatigue in general.  Diagnosis no longer excludes people with mental health issues and activities no longer need to be curtailed by 50%.  A woman in my village told me 2 years ago that she’d been diagnosed with M.E., yet she still works full-time and last year went on both a skiing holiday and walked the Great Wall of China.  Whoever diagnosed her needs the sack.

Under the new and broader diagnostic criteria with its emphasis solely on fatigue, 40% of people are diagnosed as having M.E. when they actually have another disease, such as Ehlers-Danlos or Lyme.  In being incorrectly diagnosed patients are missing out on treatments and management advice which might help the disease from which they’re actually suffering.

Another reason the diagnostic criteria is so important is that researchers will never get to the root cause of M.E., and ultimately find a cure or effective treatment, if they’re studying people who don’t have the disease to start with.

Chronic fatigue is not M.E..  The number one diagnostic marker for M.E. is post-exertional malaise  coupled with delayed fatigue and pain which lasts for several days after the event, no matter how much you rest.

No-one I know with strictly defined M.E. is in full-time employment, and the majority aren’t in employment at all.  They are all largely housebound and in many cases virtually bedbound.  Prognosis for full recovery in strictly defined M.E. has been estimated at about 7% and these are often children who are more likely to recover fully due to the fact their immune systems are still under-developed.  M.E. is a very serious disease, with profound impact on ability to function and often leading to substantial disability.  It can also kill, and M.E. has been cited as the official cause of death for several people here in the UK.

I’m vaguely aware that there has been a huge debate in recent years in the USA about changing the name of CFS to something else.  Patients here in the UK hate the name too, and reached a compromise with the medical establishment by calling it CFS/ME which neither side is happy with.  However, we’re focusing on the wrong issue.  It’s the diagnostic criteria which is the problem and the reason so many people are being mis-diagnosed.  We need to tighten the diagnosis back up to strictly defined M.E., and anyone else with unexplained chronic fatigue needs to be separated from this patient population.  You wouldn’t study and treat people with brain tumours in the same way you’d study and treat people with a headache, yet that’s exactly what’s happening to the M.E. population – and then we wonder why, in 20 years, we’re getting nowhere in finding out the cause or any effective treatments.

For a description of life with ME see this wonderful blog post written by a sufferer of many years.

Advertisements

18 thoughts on “Chronic Fatigue & M.E.

  1. Mick flint

    Have you ever considered Helminthic therapy like hookworms, or HDC’s for your condition?
    I think some people have auto immune conditions do have success with these. I have bad sinus headaches and considering them myself.

    Like

    Reply
  2. Elizabeth Milo

    I couldn’t agree with you more. I was completely ignorant of all of this when I was first diagnosed with “immune activation” almost a year after getting sick. I was sent to the Chronic Fatigue Clinic at our local hospital and I completely believed that they dealt with what I had and would have the answers. I waited 7 months for that appt and within 20 minutes it dawned on me: “ooohhh… chronic fatigue, as in any condition that makes you chronically tired…” It was such a gut-punch. They weren’t dealing with this neuroimmune bomb that went off in my body- they were mostly dealing with psychiatric problems, in fact.

    I tried to describe post-exertional malaise before I’d even heard the term. I couldn’t understand why I was crippled and sobbing days after going to the dog park.

    It’s difficult on the Facebook groups when you see someone say they have CFS… I never know what that means to them.

    I’m going to reblog this. Love to you x

    Liked by 3 people

    Reply
    1. bertieandme Post author

      I’m so glad this resonated with you EM. I *still* find it hard to describe what M.E. feels like – there needs to be a new definition for the “fatigue” and a new word to describe the “malaise”. I honestly feel how I think it feels to be having chemotherapy (and I don’t say that lightly, as 2 of my aunts died of cancer and had chemo treatment). What they described is how I feel every day of my life and that level of poisoned illness, severe brain dysfunction and weakness isn’t “fatigue”.

      When I was initially diagnosed, ME patients here in the UK in particular fought so so hard for recognition. And now it’s gone the other way! Everyone and his dog has “ME” when they clearly have nothing of the kind 😦 I’m too tired to fight any more and just hope the young activists liks Jenn Brea get somewhere. Jak xxx

      Liked by 2 people

      Reply
  3. Vicky-Louise

    Yes! So well put. This has been on my mind for a while. I found you via E.M.’s repost of your blog entry.

    I live in the UK and was diagnosed with M.E. age 10 in 1991 by a paediatrician using the criteria you describe. At the time there was no information to be gleaned from anywhere really. Later I joined AYME and The Tymes Trust and found others in my position until the internet came along and broadened my horizons for research and virtually meeting fellow sufferers.

    As time has gone on and the name CFS emerged, I have noticed that the amount of people with CFS seems to have exploded and yet out of the people I meet or am aware of who have been diagnosed with it, there are only a proportion who seem to suffer from what I am suffering from or what I guess I’d call ‘classic M.E.’ It is very troubling with regards to research!

    Like

    Reply
    1. bertieandme Post author

      Hello fello Brit *waves* 🙂 Yes! Exactly how I feel. I can’t even read the Action for ME or ME Association Facebook pages or boards these days, because I want to scream in frustration. At least 7/10 of the people diagnosed with CFS do not have ME (and I’m sure don’t even have CFS!).

      Sorry to hear you’re also a veteran 😦 I can’t even imagine how hard it must be to get ME as a child (I have a few other friends who got it in their teens so we’ll probably have friends in common!). It’s hard enough as a young adult trying to deal with not only the physical symptoms but the isolation and emotional torture, but for a child……horrendous.

      Jak x

      Like

      Reply
      1. Vicky-Louise

        Hi Jak!

        Thanks for your reply.

        I’m sure we probably do know some of the same people. I lost contact with everyone from those years- partly through choice as I went through a period of denial in my 20s, and also I developed other health problems that took over my focus for a while as I tried to get diagnosis for them.

        I think, if I am honest, part of my denial and hiding away was later due to the very fact I couldn’t identify with a lot of these ‘new’ (far later diagnosed) people who seemed to not have what I have. The acuteness of my initial illness for a start… I know of people being currently diagnosed with CFS who even in the initial stages are far more able than I am now – they don’t seem to have such an acute beginning. When I was first ill I literally went from standing one day to horizontal and unable to do anything for months the next. I almost feel as if it would be nice to have an online group for the classic M.E. people, though how one would restrict the membership and weed out the others I don’t know.

        You are right about the isolation. It’s hard as a child as it shapes you. I just couldn’t understand it – no one came to visit me except 1 friend who came once; it was as if I had died overnight. The toll on my mother was bad too – she’s been through it with me all these years (including social services hanging over us threateningly at one stage) and I feel sad for her that she had to suffer with me and lose all her so-called friends. I think it is probably true that was doesn’t kill you makes you stronger though!

        Vicky-Louise

        Like

        Reply
  4. Sunshinebright

    Thank you for your post about your symptoms. My daughter has M.E. and your description of your symptoms, for the most part, matches hers. 😦 I would like to reblog this post, and thanks to Elizabeth Milo, I found you.

    Like

    Reply
  5. Sunshinebright

    Reblogged this on Sunshinebright and commented:
    A most important post regarding M.E. (myalgic encephalomyelitis) and its symptoms. I was particularly impressed with the observation, “Another reason the diagnostic criteria is so important is that researchers will never get to the root cause of M.E., and ultimately find a cure or effective treatment, if they’re studying people who don’t have the disease to start with.”

    Liked by 1 person

    Reply
  6. Claire

    I was diagnosed as having CFS because I live in Australia and that’s just what it’s called here. I haven’t previously thought much about the name debate, but I agree that Chronic Fatigue Syndrome is a terrible name that makes it seem trivial to doctors and friends.Perhaps that’s the reason many people and doctors believe that it’s a psychosomatic condition for lazy people. My own GP who gave me the diagnosis found it hard to see that I had CFS because strangely I ‘wanted to get better, and tried hard to achieve that’.
    Be aware that there is a spectrum of how severe that this can be. I myself have fluctuated from being able to work part-time to being house bound. I have gone from being able to run 3k’s to not being able to walk 20m. I have been able to travel with CFS, and I have been unable to drive myself places. Anyone battling fatigue deserves sympathy and understanding. Their relative suffering does not diminish your own.
    I agree wholeheartedly that the criteria is too unspecific for several reasons: many people that are just going through a nervous collapse or post-viral fatigue who just need a few months of quality rest are being diagnosed as having a chronic condition, and MANY people with other underlying causes (lupus etc.) are not being diagnosed correctly. Also, there are a heap of people out there with co-morbid conditions that are just being lumped under “well, you have CFS, it’s probably a symptom of that”. I only just found out that I have allergies in addition to CFS. After TEN YEARS. A CFS/ME diagnosis is too easy, and too many patients are suffering from treatable conditions because of it.
    Thanks for bringing this issue up!

    Like

    Reply
    1. bertieandme Post author

      Hi Claire

      Thanks for a great comment 🙂 CFS was called ME in Australia when I first got sick 20 years ago, so at some stage the name change has also happened there – I remember the Alison Hunter Memorial Foundation being set up http://www.ahmf.org/aboutus.html and that Alison was the founding president of ME Young Adults in Sydney. There was some excellent activism work which came out of Australia at the time and much research done at Newcastle.

      I couldn’t agree more that ME is a spectrum disorder – I was bedridden for 10 years and can now self care. However, IMHO it goes back to the “reducing activities by 50%” criteria, which is no longer used and the other symptoms (not just fatigue) which used to have to present and no longer are. From my vast experience most people with strictly defined ME have a period of intense illness and debility, usually early on in the illness which CFS people just don’t seem to have.

      I’m not diminishing the experience of anyone who has fatigue – I have chronic fatigue as a large part of my Ehlers-Danlos so I’d be dissing myself! But it has to be separated from ME particularly for research purposes or we will get nowhere in finding a cause or cure.

      Jak x

      Liked by 1 person

      Reply
  7. Beth

    Hi, didn’t know where to leave a comment, this was just the first place I saw I could, my mum was out and about today and someone gave her your website address, people are always giving my mum websites when she mentions me and my M.E, and i just want to say yours is the first I’ve smiled at and liked! (obviously very sad and i’m so sorry for your suffering) but i have severe M.E, for nearly eight years now, and still a long to way to go recovery wise, and its so refreshing to read that im not going crazy, someone else has had or having the exact same problems as me, but clearly still has a great sense of humour and love for life – even when its different than everyone elses, which is one of my main struggles when dealing with other people, i accept it (most of the time, not always), its just getting everyone else to! Don’t get me wrong, i still have a lot of hope for the future, but your the first person who has M.E and for a long period time that has made me feel better about the fact i havnt made as much progress as i wanted to (and other people including doctors expect me to), and coming to terms with probably having to deal with it for the rest of my life and not miraculously curing myself is not such a crazy thought or giving up, just a reality. I’m having a bad today so its taken me ages to write this and i still feel i havnt got my point across, want to say a million things that my brain wont let me but it mostly comes down down to hello and thank you for sharing 🙂 lots of love Beth xxxxx

    Like

    Reply
    1. bertieandme Post author

      Hi Beth

      Thanks for taking the time, effort and energy to write such a lovely comment and I’m so glad you like my blog 🙂

      I tend to focus more on the Ehlers-Danlos and mast cell stuff, but that’s just because they’re new to me and I’m still learning to live with them, whereas after 20 years living with ME for me it isn’t news – I forget that not everyone has been ill with it as long as me!

      Sorry to hear you’re severely affected. ME has to be one of the worst diseases known to man – only fellow sufferers can understand how horrendously and unrelentingly ill it makes you, and how you are unable to do the slightest thing without feeling like you’re dying.

      I don’t know if you’ve come across this fabulous description of living with ME by Sarah louise on my blog yet, but it’s well worth a read (though very long) https://mastcellblog.wordpress.com/2014/06/12/livingme/

      There is no cure for ME – it just takes different people varying degrees of time to accept that and learn to live with the disease – it’s often harder for our care givers, like parents, as all they want to do is make us better. That’s not to say you give up hope of recovery and don’t make steps to help that happen, but by accepting you are ill you can get on with the business of enjoying your present instead of wishing it away and waiting for a future which may never come.

      Hugs
      Jak x

      Like

      Reply

Leave a Comment

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s