Severe M.E. Information Pack


Severe M.E. is a cruel and physically disabling illness which wrecks the lives of thousands in the UK and millions worldwide. I know because it took my life for several years. One of my promises back then was to do all I could, when able, to help the Family and Friends of Severe M.E. Patients understand the nightmare that their loved ones are going through; what Patients and their Carers have to battle against every day, and how the understanding, support and compassion of Family and Friends can make such a dramatic difference to their speed of recovery. Hence this Blog and the writing of my 'Understanding Severe M.E. Information Pack'. I do so hope that both help guide you through the hellish maze that is Severe M.E.

Email understandingsevereme@hotmail.co.uk for details

Great piece on Severe ME

Great to see mainstream media carrying a piece that tries to explain the hell of Severe ME.  Thank you to Whitney's family for sharing photographs of their poor son, so very severely affected.  Sometimes a photo really communicates far more than words ever can...

Thank You Stephanie Land...

Here's hoping that Stephanie's hard work pays off and she helps gain exposure of the tragedy that is Severe ME/CFS...wishing you the best of luck

Hopeful news for Severe ME/CFS Patients...

Such promising signs.  Ron Davis is a truly remarkable man, father and scientist and is hopefully the researcher the Severe ME world has been hoping for for decades.  Just hope he finds answers in time for his very severely affected son Witney...

When will The Media tell the truth?

Insulting media headlines about ME and CBT/GET today in The Telegraph.  All I have to say to journalist Sarah Knapton at The Telegraph is:  try telling this Very Severely affected ME Patient and his family/friends that exercise and a bit of cognitive behaviour therapy is the answer...

Investigative Reporter shreds UK PACE/GET Trial....

At last what all Severe ME Patients and their family and friends know:  Graded Exercise Therapy and Cognitive Behaviour Therapy are most definitely NOT the solution.  

Just love it that the PACE/GET trial is now Finally being shown for what it really is:  useless and more importantly bloody dangerous to ME patients

Top Scientist research into Severe ME

 I cried tears of sadness and joy when I read this article today.  

It brought back painful memories of when I was so very severely affected and forced to lay in pain in darkness for almost 2 years....but it also brought me hope....hope that this patient's father and his brilliant scientific mind may actually succeed where others have failed....in finding the true cause of Severe ME and more importantly a desperately needed treatment plan for all the thousands of Severely affected ME Patients still suffering.  I wish him and his team all the luck in the world.  

Severe ME research by Norwegian patient

What a fascinating piece!  Here's hoping the 'powers that be' read this and consider a larger trial to confirm what Severe ME Patients and their loved ones already know:  walking to a bathroom is like running a marathon.  

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