Newsletter July 2006

No.06/05 / July 2006
Welcome to the Invest in ME Newsletter for July 2006.


ME Stories - 1
Sophia's Story - Inquest Verdict
ME Stories - 2
Severe ME on TV
ME Conference DVD
Gibson Inquiry
ME Stories - 3
Other ME Groups/Contacts
IiME Campaign - Letter to CMO
ME Stories - 4
Have A Cuppa for ME
Byron's Little Red Book(let)

Severe ME does not generally make headlines - quite different from other 'mainstream' illnesses. Lives are lost and generations consigned to insignificance. IiME again publish details this month of further shocking treatment of people with ME and stories of severe ME. The tragedy is that there is so much which ought to be published on this subject.

In the weeks following the International ME Conference in London, in May, we have been occupied with the dreadful story of Sophia Mirza whose death was caused by the effects of ME.

Sophia's mother, Criona Wilson, has endured all of the worst which the UK health system, and the psychiatric perception of ME in the UK, can throw at her. She has now spent many weeks answering questions about Sophia and has given her story to a number of journalists.
Our media pages show some of these links.

Criona has conducted herself with dignity and a determination to see that justice is done.

The ME Conference and the story of Sophia have brought media attention to the treatment, or lack of it, for people with ME - which in the UK stands for myalgic encephalomyelitis (read here). One can read about it in Dr. Byron Hyde's little red book which we mentioned last month (see later news item).

Happy summer to all.

ME Stories 1 - Letter to Ian Gibson/Michael Meacher

After receiving an email from Julie we contacted Dr. Ian Gibson and Mr. Michael Meacher, both MPs and both sitting on the Inquiry into ME -

Dear Dr. Gibson and Mr. Meacher,

You may be aware of the story of Sophia Mirza who died of ME (the verdict from the inquest was recently mentioned in the New Scientist and BBC and ITV) -

How is it possible that a young woman can be sectioned for having an illness of organic origin?

What an indictment of the UK in the 21st century!

And yet still this persecution continues.

Yesterday Invest in ME had a letter from one lady who suffers from ME and had to endure the disgraceful tactics of a DLA representative. Here is what she wrote -

'I have just been through the most humiliating experience of my life at the hands of a DLA medical examiner.

He was here 2 and a half hours and told me to get rid of my "energise DVD (from the charity ME Research UK)", that ME was all due to deconditioning and negative behaviour patterns. He said the only one keeping me in that bed is me. The confusion is due to me not using my brain, hearing problems due to not using my ears, light sensitivity due to not going out in the light and so on and so forth. Why should I expect a blue badge when that would only discourage me from walking, he said.

I felt humiliated and ridiculed by someone who was clearly a psychiatrist of some description. He said he gave seminars to students on "people like me".
He seemed to enjoy the whole thing.

I was refused DLA.
I have had ME/CFS and fibromyalgia 12 years and this is the first time I have applied, having tried everything to get better on my own. I hope research will stop this kind of thing from continuing.

How on earth can this be allowed to occur? I think it appalling that we allow people to die from ME. How on earth can we call ourselves a civilised society when even the walking dead are treated in this way.

Good luck with you Inquiry into ME - which we all appreciate. The stories such as the above indicate how overdue proper funding and treatment is in this country.

An unbelievable story of UK 2006 society - except that this is occurring all of the time.

Sophia's Story
As many may have seen or heard the inquest into the death of Sophia Mirza recorded a verdict of death as

Acute aneuric renal failure due to dehydration arising as a result of CFS

As the two pathologists could not agree whether to use CFS, ME or ME/CFS then CFS was used in the verdict. People have still to be

educated on the difference.

Sophia's mother, Criona Wilson, was interviewed by several television channels and newspapers/magazines.

Meridian ITV devoted 2 programmes to the story with reporter Stacey Poole again highlighting the tragedy of ME. You can see the Meridian ITV interview with Sophia's mother here. The Inquest summary is here - and we have now translated that into Spanish - see here.

Sophia's story has been translated into German (see here).

ME Stories - 2

One would hope that what happened to Sophia couldn't happen again.

Yet from Norway we have the story of Birgitte as told by her husband Leiv - proving that even the wealthiest of countries fall far short of provision of humane treatment for people with ME -

"Birgitte was put into the nursing home in August 2004.  The head nurse received a treatment manual for seriously sick ME patients (written by the Norwegian ME organization) and promised to follow this. 

At this point in time Birgitte was able to sit in a wheel chair, could use the toilet and could move her arms and legs. 

However,  she was put under conditions of extreme stress.  Due to a total lack of knowledge and competence of this illness the nurses and the nursing home doctor still think she has a psychiatric illness.  The treatment manual from the Norwegian ME organisation is, therefore, not  used and the patient gets more and more ill."

Read more of Leiv's story here.

Those who have purchased a copy ME Conference DVD will probably have seen the story of the Krisner family in Norway where all three children have ME.

IiME now have this story on our web site with a different subtitle format for the translation. See here.


The DVD of the Invest in ME - ME Conference 2006 has now been sold to customers in UK, Ireland, Norway, Denmark, Sweden, Germany, Holland, France, Israel, USA, Canada, Australia and New Zealand. The initial batch of the DVD set has almost been sold out.

A copy of the DVD has been also sent to Dr. Ian Gibson as evidence for his parliamentary inquiry into ME.

From Conference feedback -

 "What struck me most about all the speakers was their genuine commitment to their patients, research or charity work. Although all working in slightly different areas, they all share one common bond…..working towards finding the cause and cure for M.E."

The price of the conference film at 13 plus postage and packaging for UK delivery, slightly more for overseas delivery.

IiME are now working on a short version which we hope will be available for MPs and GPs and other specialists in the UK and abroad who, initially, may not feel they have time to go through six and a half hours of conference material. We are also looking into producing an audio version for those who do not have a computer or are visually impaired.

To purchase or to obtain more details click here.

A new website has been created by Dr. Ian Gibson's team to support the parliamentary Group on Scientific research into Myalgic Encephalomyelitis.

This site contains details of all meetings including the minutes from those meetings.

The Gibson Inquiry news page is here.

ME Stories - 3

Another story to add to the ranks filling our pages -

"I am basically going untreated now as my GP has referred me to a psychiatrist as he is unsure of what anti-depressant I should be taking. I am hoping and am told they have patients with this condition and will possibly know what has worked on others that might help me gain some part of my life back."

Thanks to Cynthia for submitting this.  Read more of Cynthia's story here.

This month we feature Holland.

Frank Twisk has kindly provided some information on life in Holland - see here.

We hope and wish to make contact with more international groups in the coming months so please contact us if you would like to be included in our Guest groups - email us here.

IiME Campaign - ME As a Notifiable Illness at Schools

Our letter to the Chief Medical Officer was sent in July.

This is something which Jane Colby referred to in the ME Conference as well as in her testimony to the Gibson inquiry and we believe it needs to be taken up as a specific campaign. IiME are happy to work with Tymes Trust to make this happen.

See details here.

ME Stories - 4

Richard Senior's wife died in 2003. On her death certificate ME was stated as a cause of death -

"Even if it had been the right treatment, by that time it was too late: so many years of neglect, disbelief, wrong medication, wrong diagnoses; so many times referred to psychiatrists, who to a man sent her away because they couldn’t find anything wrong – with a prescription for an anti-depressant just in case…."

Please read Richard's story here.

IiME recently held a Have a Cuppa event in Hampshire. 156 was raised and a cheque was delivered to ME Research UK. If you wish to organise such an event feel free to contact IiME for any support we can give.

Dr. Byron Hyde has been refining and updating his red booklet which he made especially for the ME Conference and the latest version may always be found at his Nightingale Foundation in Canada - see We hope to be able to show an updated version soon and the orginal, abridged version is still available here


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Suomi Talvi - but spring is coming
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