Posts

Showing posts from September, 2010

Formation of a Breakthrough Prayer Circle

It has been suggested that we form a Breakthrough Prayer Circle, for anyone who wants to join in, on Saturday 2 October at 9pm  BST. For anyone who feels too ill, or too stressed,   to pray the prayer themselves, please just click onto this  Video of Linda praying it :



The Breakthrough Prayer
by Theresa and PaulineGod our Father, we love you and know you love us. Today with one voice we beseech you to help us in our suffering.
May we bathe in the light of your love and healing, giving us strength to get through each day. By the power of your Holy Spirit uplift our carers and lighten their heavy load in dealing with this unrelenting illness and their own despair.

Enfold in your special love, those who live alone enduring further isolation and loneliness. Dearest Father we pray fervently for a major medical breakthrough in ME.

Bring your Divine inspiration to the researchers of this terrible disease, which is sweeping across your beloved earth .

May the mountain of ME be removed and t…

A Letter to Ed Miliband

A Letter to Ed MilibandGreg Crowhurst 28th Sept 2010
(Permission to Repost)

Dear Ed Miliband,
Back in 1997, when New Labour first got elected, my wife had been very sick for 4 years. Today, when you give your first speech as Leader of the Opposition, she will have been ill for 17 years; in all that time nothing has been done to help her.
One of the first things that local Labour activists did , in our area, was to call round house to house , to celebrate their win Both my wife and I who are Labour supporters, though not party members, were utterly shocked by the rhetoric being expressed that “everyone knows that 90% of people on Benefits are scroungers.” Although we were assured by our MP , at the time, that this was not the Party view, it clearly was very near to the mark.
My wife has Very Severe Myalgic Encephalomyelitis (ME), that means that she is as functionally impaired as someone suffering from diabetes or heart failure or kidney disease, and as severely disabled as those with…

Here in Neverwhere..

Khaly has posted a terrific  new blog : http://cfsuntied.com/blog2/2010/09/25/neverwhere-an-homage-to-advocacy-in-the-trenches/

..which introduces the concept of "Neverwhere" :

"Neil Gaiman is one of my favorite authors. In his book “Neverwhere”, there is another whole world brewing beneath the city streets, in London Underground. People fall through the cracks and end up there, becoming forever invisible to those who walk and work and live their normal lives Aboveground. Life in Neverwhere ceases to follow the rules of normalcy, and getting through each day’s fresh serving of Hell is a cause for celebration.So it is with this disease, which we call an invisible illness." I've posted a response on Khaly's blog.  Here though  I'd like to chart ten facts I've discovered , for myself,  about Neverwhere , this place where we struggle :
1. Everyone eventually walks away : Friends, Family, Church, Consultants.2. No one really wants to know how bad thi…

Briefing notes on the CDC Empirical Case Definition for CFS

Stonebird :
Briefing notes on the CDC Empirical Case Definition for CFS

(I spent a lot of time recently searching   for a concise overview of the CDC Criteria and couldn’t find one – here’s what I was trying to find out :)

The Centers for Disease Control and Prevention (CDC) ‘s empirical case definition for CFS involves assessment of symptoms, disability, and fatigue through the :

• Symptom Inventory,
• the Medical Outcomes Survey Short-Form-36
• and the Multidimensional Fatigue Inventory . ( Jason et al 2008 )

“Prepared by government bureaucrats, rather than by physicians . “ the CDC case definition according to Dr. Nancy Klimas is “rife with ambiguity. Symptoms are counted either as present or absent, without regard to severity or frequency." http://www.name-us.org/DefintionsPages/DefCFS.htm)

In 1988 after an outbreak at Incline Village Nevada, (Stein 2005) the CDC formed a committee that named the disorder “Chronic Fatigue Syndrome” and suggested criteria for a resea…

Pseudo Science in the UK : re "Psychiatric misdiagnoses in patients with chronic fatigue syndrome".

Psuedo Science in the UK .A Stonebird response to

Peter White

Just ahead of the PACE trail report, Peter White has published a report : Psychiatric misdiagnoses in patients with chronic fatigue syndrome, which found that out of 135 participants at a PACE trail center , diagnosed with "CFS" according to the Oxford Criteria , 56% had a" co-morbid psychiatric diagnosis."Greg Crowhurst, Sept 17th 2010Permission to repost






Of these : 31% had a major or minor depressive episode 11% had dysthymia 35% had an anxiety disorder 2% had a an obsessive compulsive disorder 6% had post-traumatic stress disorder 8% had Social Phobia 15% had a "specific phobia"
There were 14 assessing doctors : 10 were psychiatrists (one consultant and nine trainees). one was a consultant physician three were general practitioners with a special interest in CFS.
Is this a surprise ? No !!
White’s report simply confirms how much The Oxford Criteria have nothing to do with ME.
Wa…

The fat lady's singing alright

The fat lady's singing alright
Greg Crowhurst 8th Sept 2010
.... who could have envisaged Margaret Williams ever writing this  : "It may be coincidence, but a video is currently circulating on the internet featuring Francis Collins, Director of the NIH, singing “The Times They Are A-Changin’ “ on Capitol Hill (Rock Stars of Science: http://www.youtube.com/watch?v=2SNHDlKYSt0&forumid=331851 )." 
So Near yet So far : http://www.meactionuk.org.uk/So-near-yet-so-far.htm
Such extraordinary times !! That  BBC story yesterday ,  confirming that the body is fighting infection in ME :
http://www.bbc.co.uk/news/uk-scotland-tayside-central-11204884, 
then the CDC advertising for a new director to replace Reeves.  Harvey Alter's article -   the man who virtually discovered Hep C, finally being published in the PNAS.
 and what with  Jonathan Stoye, National Institute for Medical Research, UK   , speaking at the first International XMRV Conference  .....
hey, the fat lady's singi…

Grrr !!!

So wound up, literally, was I by that Press Statement from the Science Media Center, which Jean Harrison posted on CoCure this morning , that I simply had to do something to contain  myself....

So I got out my bike.

While I was standing on the street getting myself sorted out : IPod, helmet, goves, glasses, a woosh of lycra sped past: a multicoloured  swarm of cyclists -  and dissapeared.

Anyway I jumped on and set off peddling furiously : "PNAS...Sceince Media Centre ..grrr...."

The woosh  of lycra appeared on the  horizon....

"Grrr...Science Media Centre,,,such a blatant  outrage.........!

Suddenly the other cyclists were just ahead of me , cycling up what passes for a steep hill here in Norfolk.

"Grr..grrr......."

I was in the centre of them, head down, fuming, and then way out in front

I had  caught up and passed the woosh, all less than half my age,,,,,, on a hill !!!

Off I sped like a dart and came back eventually , still peddling furiously.

I will neve…

Why Norwich ?

Stonebird :Why Norwich ?
Greg Crowhurst Sept 3rd 2010(Permission to Repost)
“The challenge facing us is to learn to perceive and ride the waves of change or else risk sinking in an over-populated pool of confused, dispirited and frantic  people.”Greg Crowhurst ( Community Living Magazine 1993)
It is a fact of life that the only ones who get anything done are those who have the courage to get up and make it happen. For five years we have been fighting the fight of our life here in Norfolk.
Me, I am fighting for my wife who is so seriously ill.
I have tried to make myself look as presentable as possible and with no money and only my convictions to guide me, I am one of the few in this country, it seems,  who has actually got up,  opened the front door and gone and sat in board and meeting rooms , arguing, against all the odds, for a biomedical ME service.
I even led a delegation of ME patients , carers and Professor Malcolm Hooper once,   into a meeting where  the Chief Executive had refuse…