Newsletter September 2006

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


ME As a Notifiable Illness at Schools
NHS Direct Encyclopaedia
Saying NO to CBT and GET
ME Conference in JCP
ME Conference DVD for USA/Canada
Sophia's Story Translation
ME Story -1
The ME-baY
ME Story -2
Other ME Groups/Contacts
ME Conference 2007
ME Story - 3 Casey Fero

Despite the constant fight to be heard pwme and their carers are resilient people. They have to be considering the obstacles they need to pass. In this newsletter alone we show the disappointing response from the UK Chief Medical Officer, we see the NHS Direct web site is out of date with current knowledge about ME and there are more stories of the injustices still being exposed relating to pwme.

Yet ME has been featured in the Journal of Clinical Pathology recently and the ME Conference DVD is now circulating in North America, thanks to several friends who are campaigning for justice there.

As we await the Gibson Inquiry report this Autumn we have a date set for the ME Conference in 2007. This year's conference was an international event and we hope next year's will be too.

IiME Campaign - ME As a Notifiable Illness at Schools

Our letter to the Chief Medical Officer which was sent in July received a reply.

One tends nowadays to expect the standard template reply from the minister at the Department of Health who is given the task of replying to people with ME. Usually full of the same old, tired and misinformed clichés the replies show not only an apathy to the illness but also a disregard for human suffering.

However, when the UK Chief Medical Officer repeats these same statements we cannot leave that unchallenged. In our reply we have requested a meeting at the earliest opportunity with the CMO. We have not yet received any response to this request! Our page on this campaign is available here, and we have added a reference to a paper on evidence of epidemics - see here.

Thanks to Mike for sending us this letter he wrote to the NHS to complain about the information on their NHS Direct website (here), concerning CFS (the term they use to describe ME).


CBT is said to combat “thoughts and feelings causing certain behaviour” and is also said to be one of the most effective treatments for CFS. Inference: CFS is a behavioural (psychological) disorder.

This is completely unacceptable because the World Health Organization has classified CFS/ME as an organic brain disease (ICD-10:G93.3), and a condition cannot be classified under more than one rubric in the ICD, since each rubric is mutually exclusive. The UK accepts the WHO Regulations concerning nomenclature and is therefore obliged to accept the ICD classification.


See Mike's full letter to the NHS Direct Chief Executive here. Mike points out that one can also complain to the Health Commissioner and the Health Ombudsman.


As the previous letter points out the use of Cognitive Behaviour Therapy and Graded Exercise as treatments for a neurological illness may show the insidious side of the politics and vested interests within healthcare in the UK, where a powerful psychiatric lobby has been able to influence the discussion - and the funding - around Myalgic Encephalomyelitis. Some people may feel compelled to accept either of these treatments for ME.

So here we are happy to publicise reasons why CBT and GET do not need to be accepted. See here.

The presentations from the ME Conference in May 2006 have been published in the Journal of Clinical Pathology - see here.

This is a big boost for the real science and research being carried out on ME and hopefully indicates that the tide is turning once and for all for this illness.

..and ME Conference DVD in USA/Canada Format

......and we are now able to offer a version of the DVD which is compatible with North American systems. The NTSC format of the ME Conference 2006 DVD is available via this link -  click here. Price for the North American version is £16, price including postage and packaging. 

Sophia's Story

Sophia's story has been translated into Danish by Lajla Mark (see here). We hope soon to have a translation in Finnish and we welcome publication of this story in other languages.
ME Story - 1

Sophia's story isn't unique. Another dark story provided by the Reading ME Group -

"During that time I was taken captive by psychiatrists and taken to the Psychiatric Unit (at the) Hospital. For six months I was subjected to severe and terrible psychological abuses in what I term their `interrogation chambers'. I was subjected to a regime of the threat of physical torture, bullying, intimidation, scorn, derision, lies, deception, malice, and above all hatred. The stress and emotional torment induced in my mind was extreme beyond description. At the end of their `treatment' the psychiatrists claimed to have done wonders for me, and to have transformed me into a wonderful whole new person who'd progressed greatly in mental health and well-being. But the truth was that the psychological damage inflicted into my vulnerable mind was colossal, and has so far lasted the rest of my lifetime."

Thanks to Jonathan for another shocking story. Read more of Jonathan's story here.

The ME-baY
We have now set up the ME-bay which will allow people from all over the world to fund work by Invest in ME.

The ME-bay is simple - you can sell your items via E-bay and elect to donate a part of the profit to invest in ME. Invest in ME has no salaried staff, and any donations we receive go toward our efforts to promote and fundraise for biomedical research into ME.

Read more here.

ME Story - 2 Temporomandibular Joint Dysfunction

In case you haven't heard of TMJ before we thought to add this story to the newsletter this month.

"You know, my health downturn actually started with TMJ.  It gets attributed to teeth grinding and stress, but in my case it was a sports accident - it happened when I was skiing."

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

This month we feature Norway - and the Norwegian MEA. Run by Ellen Piro the Norwegian MEA has been very active in the current vaccines scandal which is being discussed in Norway. Just a brief introduction to the Norwegian MEA as Ellen has been enormously busy in a national debate surrounding vaccines and their own NICE policy making. For more about Norway's MEA - see here.

The date for the ME Conference 2007 in London has been set for 2-3rd May 2007. We hope to kick off ME Awareness month by again showing the status of ME and then publicising other events which will be planned for May all over the UK and across the world.

Next year we are hoping to extend the conference over two days with the first day mainly for people with ME and support groups - and the second day for medics. Delegates will be able to choose to participate for one or both days and we hope to be able to welcome delegates from abroad. More details will be available in our next newsletter. A separate web page is set up here as well as a new mailbox -

We welcome the chance to work with ME groups around the UK, and abroad, who are interested in furthering the recognition of ME as a serious health issue and who would like to be involved in the Conference.

One of the earliest stories of ME which was put on our site in 2005, shortly after IiME started, was that of Casey Fero (see here). Casey's parents, Pat and Bruce, have continued their campaigning for ME and here we have been given permission to publish extracts from Pat's journal. We also have a message from Pat concerning the Casey Fero Memorial Fund – Blood & Tissue Bank. Read more here.

As we publish this newsletter there is a patent filed for a possible diagnostic test and treatment produced by Doctors John Gow and Abhjit Chaudhuri. The description includes the following -

"...they believe CFS/ME to be an acquired condition where there is a shift in the functional systems of a select number of genes regulating specific biological functions (e.g. infection and immunity, cell membrane function and cell cycle)..."

See the full description at  


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