Tuesday, 10 December 2013

ME - A "Controversial" Illness!

When I tell people that I have ME, I am sometimes told that it is a "controversial" illness - as if I perhaps had a choice in succumbing to it!

The controversy is largely due to the name Chronic Fatigue Syndrome now favoured in both UK and USA, and which many patients (myself included) believe belittles the true nature of ME.

Part of the problem is that doctors do not yet fully understand how ME symptoms are caused - nor is there yet an easy diagnostic biomarker.  This allows the psychiatric lobby to step in and describe the illness as just a fatigue that is all in our minds!!

Many diseases that are now understood, were previously declared by psychiatrists to be the patient's elective illness behaviour. Or put another way, the patient was succumbing to "hysteria" and the illness was all in their mind.  It is not so long ago that MS was described as hysterical paralysis!

In many ways ME patients are still being treated like this because both the UK and USA call our illness Chronic Fatigue Syndrome instead of the full name of myalgic encephalomyelitis, as described by the World Health Organisation.  

Under the NICE guidelines, here in the UK we are offered only Graded Exercise and Cognitive Behaviour Therapy as "treatments". The first is damaging and the second is only useful if it is given to help us cope with being so incredibly ill. Neither treat ME in the sense that neither can help us to recover our previous good health.

The IOM (Institute of Medicine) contract,
 in the USA, has been set up to re-define ME.  It is likely to make matters much worse. There is little enough funding getting through to researchers keen to find the real biological problems faced by ME sufferers. There is a very real worry that this IOM panel will favour a psychiatric approach to ME and in doing so further frustrate the biomedical study of our illness.  There are many on this IOM panel who support the psychiatric view point of ME as simply a form of chronic fatigue.

However there is light and hope.  Work has been done that shows very real differences between ME patients, and those who are simply fatigued or de-conditioned.  This link describes a Two Day Exercise Test that shows how Post Exertional Malaise is a big problem for sufferers of ME and that this does not show up for deconditioned controls. Indeed this has now been suggested as a biomarker for ME.

Surely this should be evidence enough to stop the psychiatric nonsense that this illness is simply our mistaken beliefs about our state of health? Yet for some reason the importance of this two day testing is being ignored.

The article below describes how Susan Kreutzer, today, led a demonstration to tell the Department of Health and Human Services (USA) that "We've had enough!"


Getting a demonstration together is difficult when so many ME patients are confined to their homes. and those that manage to "get out" may LOOK normal but their "payback" comes later. (Ask me how I know this!)

So to round off my ramble, I'd just like to say to Susan Kreutzer and her team of helpers:

"THANK YOU!  You are amazing people for taking this stand. Many more of us are with you in spirit if not physically by your side. My signature is up there somewhere on your banner, and it's yelling support for this action! "

Perhaps now is the time that this patient community finally starts to get noticed?

And heard!  


  1. Sometimes it feels as though we are living back in tha ages doesn't it, I remember speaking to an old lady whose daughter had epilepsy as a child, it wasn't recognised back in her day so she was seen as having a mental illness and sectioned at 16 and stayed there all her life as she became institutionalised . Only the other day singer Susan boyle was finally diagnosed with aspergers (autism) after years of being told she was brain damaged at birth. Even a short while back in tha 80's people with M.E were being treated like witches and tipped from wheelchairs into a swimming pools deep end to determine if they sunk or floated, if they floated ( struggled to save themself) then they weren't really ill because they had energy to save them-self bizarrely enough . We only have to look at the more recent case of Karina Hansen forcibly removed from her home and kept in hospital by psychiatrists . We have an awful long way to go but its only Susan Kreutzer and her team and all those like her that stand up and refused to be silnced will we eventually get somewhere. Thankyou for this blog ;) xxx

  2. Thanks for taking the time to comment. It is a strange old world living with ME. Karina's case is horrendous, and it seems there is another similar in Boston USA now too. Yup - change is due soon.

  3. Great inaugural post! (suggestion- maybe spell out IoM for those who don't know what it is)

  4. Great post..I'd like to reblog your article on my blog Linda Williams Stirling at eclecticstirling.com, with credit and a link to you, of course.

    1. Thank you for your complement. Would you mind not just re-posting the whole article but instead, perhaps make your own brief commentary and then use the first couple of paragraphs as a quote and provide the link to here if folk want to read the whole thing?

  5. I genuinly think that in the future, people will look back at the history of ME and wonder how it was dismissed as psychosomatic by so many people for so many decades when so much biomedical evidence exists.

    1. Yes! And hopefully that time will be very soon!