Showing posts from October, 2009

An Informal Guide to Part 3 of the DLA Form

An Informal Guide to Part 3 of the DLA Form for Severe ME sufferersGreg Crowhurst 2009
For anyone with severe ME, the DLA application process can be an absolute nightmare, with some sufferers who are far too ill to even apply ; this is a terrible situation.Part 3 of the Form is particularly gruelling ; it is so long and it is difficult sometimes trying to tease out all the issues, for severe ME is such a complex , devastating and still misunderstood disease.Based on the principle : never be afraid to provide as much additional information as possible for the Assessors; here are some general suggestions , which might be of help. Remember you are free to add as many extra sheets to your application form as you like.For much more detailed assistance , Benefit and Work’s superb step-by-step guide to the whole DLA Form , is a fairly expensive but recommended investment :
Part 3 Getting Around Outdoors
Q .27 Do you ha…

CBT & GET in ME : a Boundary Issue

Cognitive Behaviour Therapy and Graded Exercise Therapy in

ME : a boundary issue .

Greg Crowhurst

29 October 2009
(may be reposted)

"I could see the sense in graded exercise and how it could help someone to comeback from an illness and aid in their recovery but unfortunately with ME this treatment does not work and just sets you back. " (Person with severe ME)

"Giving GET and CBT to people with ME is like trying to prescribe treatment without first investigating the disease – madness ! We need proper biomedical research to find out the cause(s) of this illness and to investigate fully what it does to the body.. GET and CBT have been found to be at best unhelpful to those with ME at worse, harmful." (Person with severe ME)

"Having been a career in professional management, (before forced to give up work through ill health), as part of management development, I touched on CBT within the psychology of training so knew a little about its application/benefit. Not a cy…

Greg Crowhurst : Spinning the web

If anyone looks up my name on a search engine,one of the first listings they come across is an article called "Greg Crowhurst : Spinning the Web" - a defamatory piece.

I was besieged by requests from the mainstream ME community to ignore the article when it came out - for it could very well have sabotaged the Judicial Review at the time.

I was not that bothered anyway. Being wronged seems to be par for the course, for anyone who is brave enough to take a stand . I am proud to stand along side giants like Malcom Hooper, Margaret Williams, Kevin Short; all of us have suffered similar attacks, in fact mine is nothing compared to the abuse that has been directed at them from ME "activists ".

However the wider world may not understand . The article greatly bothers my wife (for it also attacks her) and is of no help when I submit serious articles to the Nursing Press or indeed try and get my book published.

Thinking laterally , I have come across this incredibly approp…

A Biopsychosocial Recipe

Take on real, severely disabling and chronic
physical illness,
And piece by piece destroy everything
That defines it.
Change its name
Downgrade its symptoms
Minimize the criteria to identify it
Use rehabilitative techniques as first-line treatments
And blame us when we fail to get better
Deny the physical reality of it
Provide limited and incorrect information
To Government departments, the Benefit Agencies, the Health Service,
About the true nature and serious epidemic propensity of the disease
Ignore any physical research
That disprove the lies
Misuse money meant for accurate assessment and treatment
Focus on one single criteria - fatigue-
That is not even an essential symptom of the disease
Sentence thousands of people
To live their lives hidden away
Suffering daily
Hounded by Benefit Agencies
Denied by Insurance Companies
Ridiculed and derided by the public
Misunderstood by family, friends
And even doctors and nurses
Living in poverty
On the edge of existence
What is the outcome ?
Chronic Fatigue Syndrome and…

ad infinitum

The throbbing pain continues
ad infinitum
so too my limitation continues
ad infinitum
Today I cannot bear it
This moment
This time,
It is too much to bear
too much to endure
too much to believe
that it has been here
continuously day in, day out
for 15 years
How can a body burn in pain
so continuously
without anyone official doing anything about it ?
without anyone looking to find out what is wrong ?
without anyone offering hope that it will change ?
And how can the psychiatric lobby get away with stealing the name ME
and making it into a disparate, vague, chronic fatigue syndrome ?
With stealing a disease and creating a condition ?
With stealing 64 symptoms and covering them up with 6 ?
With stealing the funding for ME ?
And using it to create their own fatigue clinics
that don't actually treat any neurological symptoms.
With stealing the truth that ME is a neurological illness
And creating a myth that it is all in the mind ?
With stealing our right to be taken seriously and creating a dangerous

Evil ?

And what is wicked if not the deliberate
abuse of a vulnerable person ?
What is evil if not the deliberate and intentional denial and destruction of a real physical neurological disease
and replacing it with myths, limited assessment and potentially abusive
and the lie that you will get better ?

Just tell me how I will get better
with everything being syphoned off from neurological ME
and being channeled into the coffers of the psychiatric lobby
and the insurance lobby ?

Linda Crowhurst

"Somatisation" rules OK ..?

"The years during which thousands of research papers and media articles were written, and much research money wasted, purporting to explain away a life-destroying neurological disease with discussions of faulty illness beliefs, stress, school phobia, personality disorders, miracle cures etc. must now be consigned to the pile of faulty research which has so dominated Medical Research Council research policy toward ME.STATEMENT by INVEST in MEWPI RESEARCHERS DISCOVER RETROVIRAL LINK TO CHRONIC FATIGUE SYNDROME

"Chronic fatigue syndrome" is over, except maybe in Witchita, in Macon County, Ga. and in Bill Reeves' head.History is shifting. The pundits, the people who are paid to ask why, will finally ask the questions they should have asked twenty-five years ago: why medicine is so obtuse, its practitioners so willfully ignorant. How could our government and the governments of other nati…

Years fly by

Years fly by

I am bewildered by time
Confused by its passing
Apparently slow
Unendingly similar
Yet years fly by
and here I am ageing
whilst apparently
of consequence
The past becomes an empty
egg shaped space
full only of golden light
and silent loving
The present-ever-glowing
The future unthought of
and unplanned for
in the impossibility of now
the endless inability
spilling over
down the decades
Life becomes lived
despite its somehow
lifeless quality
I find it all so very bizarre
Trapped in the quandary
of this illness.

Linda Crowhurst
18th October 2009

Now we can get down to business : reactions to XMRV

Now we can get down to business...
Some international reactions to XMRV and ME

Greg Crowhurst Oct 19 2009
(may be reposted)

"It's a Brave New World for Chronic Fatigue Syndrome" Paul Cheney, MD

XMRV - the findings :
Our initial research showed that 67% of the ME/CFS patient samples tested positive for XMRV. Further work has found that 95% tested positive. Work continues to understand how this virus works within neuro-immune diseases, but this discovery proves a significant correlation between this serious retrovirus and these diseases. Our work suggests, but does not prove, that XMRV may be the underlying cause of ME/CFS. Much additional work needs to be done to understand how XMRV causes disease and what types of diseases it is linked to it.

A few fibromyalgia samples were tested and yes, they were positive. However the sampling was very small, and testing will have to continue on a much larger scale to begin to draw significant conclusions. In addition, many patients with …

Please tell me what to do....

What do you do when your wife lies beside you night after night, crying in the small hours of the morning with the pain and crawling discomfort both inside and outside her body ?

I try and hold her.


my wife recited in her head last night,

"will it be a cure for ME
or a distraction
psychiatric correction ?"

Nancy Klimas on XMRV

Our Day in Court

Our Day in Court
Greg Crowhurst
16th October 2009

(may be reposted)

There is such a stark video on

detailing how the CDC withheld the facts, back in 1979, relating to the
danger of swine flu vaccination , from the American public, an omission which
resulted in hundreds of cases of severe neurological damage, that persist to
this day.

Shocked ? if you have experienced the hard politics of the ME world all these
years , no you are probably not anymore.

The same site points out how :

"Pharmaceutical company profits seem to be all that matters to our leaders.
For the medical bureacrats no lie is stooping too low. They have no limits to
their treachery and chicanery. "

Oh, yes.

The owner of the site, Steve Barwick also covers the XMRV story, although
cautiously , for he is worried about Big Pharma "getting ready to use the
finding as a means of getting everyone who has been diagnosed with chronic
fatigue syndrome onto the AIDS drugs cocktail."


The daily reality of severe ME