Breakthrough Prayer Circle 9pm BST Nov 27th

Tonight we pray the Breakthrough Prayer , continuing to trust in God's goodness and presence here with us.


Living with Severe ME is a daily struggle, we need His help, we need His Power, we hold onto Him in faith, trusting that miracles can and do happen, trusting that change will come.


And so we also pray :

Out of all problems
All wrongs, all hurts
Let healing spring eternally
And peace flow in abundance.
Amen

May we be blessed
With confidence and trust
In You Lord
Knowing that all things
Are possible to God.

Let us ask with boldness
For healing and help
Let us ask with confidence
In the name of Jesus Christ
Amen

Speak Your Truth

Speak Your Truth
17 Years of Caring for Someone with Severe ME

As Dr David Bell famously said (http://www.facebook.com/note.php?note_id=200170205538,)  my socks are going up and down. I am so enthused because last night the complete outline of the presentation I shall deliver on Dec 12 at the AONM Conference in London, was finally decided.

I have just been typing it up. Wow and wow.

Well, I think it's good !!!

It's just been great for me to encapsulate the experience of 17 years  into one power-packed hour, with a (gentle) let's rock-the-world   at the end..

So there's a lot of work to do. If I can't get in person, the whole presentation needs to be able to be screened remotely.

I don't know how  I am  going to do that  -  yet;  but these old socks  , they are most certainly  up for it right now...

Your Truth

Spending my time working on the AONM Conference presentation for Dec 12, I am very pleased indeed with what I did yesterday. So powerful; not because of me but the sheer force of the material. This is going to be good.

Like the tiniest scrap, like a fragile thread, a tender seed, the all-important theme of my presentation is becoming apparent. At this stage I have to do all I can to let it grow,to listen carefully , to  let it tell me where to go with it; I have to handle this cannonade with kid gloves. If I do it right, wow......

So, the theme is Truth.

Breakthrough Prayer Circle 9pm BST Saturday Nov 20,2010

 We continue to  pray the Breakthrough Prayer , with absolute trust and hope in our hearts. Amen.


We focus on Trust,trust in God,trust in the power of truth to change hearts and minds.We keep our eyes on the truth of this illness,we lift our prayer up to the Heart of Love with total conviction that God hears,that God knows, that God acts.


We trust in His Mercy to save us.We trust that the time is now.


And all there is is love
And all there is love
And all there is is love
This is my mantra
This is my truth
This is my way
This is my hope
This is my path
This is my place
I return here again and again and again
I return here in trust again.
Amen


Living with ME is a struggle.We look for inspiration and light to guide us.This is encapsulated in this song :

New Blog

It was just the  seagulls and fields here ,  big, big sky and  me on my bike   thinking I need to take myself seriously as a writer- or I am going to go mad.

I write letters to agents , but when I read them later...cringe...that, I realised this morning is because I don't yet take myself seriously  a writer.

So I have joined   Litopia  , the writer's colony : http://litopia.com/ it is me ,then,  being a writer. Yes , yes, yes.

This quite hard actually - for being an ME activist is such a large part of my identity : one I need to move on from,  in so  many ways.

I've spent at least 10 years working on my children's tale :  The Adventures of Nick Swift. In the meantime I've had two spiritual books published - by mainstream publishers.  Nick Swift however  is my driving passion.

I am talking  back-to-the -wall .  Either I get The Adventures of Nick Swift published ,or what ?? Decades of suffering inevitably lie ahead;  I have to do something about it. You need money,you need influence, you need to be able to fund a clinic, cutting-edge biomedical research.

Right now I have none of those things; 18 years of caring has stripped everything  away and pushed us into deeper and deeper poverty and isolation. There's only my creativity, my love for my wife and this book that I  have spent a decade writing left.

  I am reaching out.

 I have  begun a new blog too - on the process of being an author :

http://publishingnickswift.blogspot.com/

The dialect of desperation

Really scared now; that shiver of fear. I look at Linda , so hunched in  pain eyes so sunken, tissue constantly to her mouth to absorb the saliva that torments her day and night , symptoms throbbing.  Not knowing what she can eat anymore.

 I knocked out some sort of response to NICE before the 5pm deadline yesterday, but it bears no  relationship to how I feel about their atrocious conclusion that they see  no reason to change the Guideline and I am annoyed with myself.

 I am too stressed, too concerned with how to cope though  , to have written much more. Yes, I could have done a lot  better, but it's better to speak up than not, I believe,  and yesterday  was all I could manage.

That's all anyone can do.

We prayed Saturday night that Malcolm Hooper's formal complaint will be successful; it is the kind of  prayer that  I think Tommy Tenney calls the “dialect of desperation” (pg. 22, Prayers of God Chasers).

He writes , “I know it wasn’t my polished prayers as a professional preacher or pastor that brought me to an encounter with God years ago.....He met me in the midst of my inarticulate and passionate pleas of desperation and tears of frustration” (pg. 23, PGC).

With  NICE  declaring   the miserable failed  FINE trial results  "inconclusive" , we are overwhelmed with turpitude. I am glad I  made a stand yesterday. I am full of hope that Hooper WILL be heard; it was a powerful prayer.

When you are in this place, hope is the only thing  .You simply  have to cling on.

Stakeholder Response to NICE CG53 three yearly review

Stakeholder Response to NICE CG53 three yearly review 
Greg Crowhurst 


Nov 13th 2010

In accordance with the stakeholder consultation process of 1 to 14 November 2010 concerning NICE’s scheduled 3 year clinical guideline review I write with reference to:

1.       The National Institute for Health and Clinical Excellence (NICE) Clinical Guideline 53 entitled ‘Chronic fatigue syndrome / Myalgic encephalomyelitis (or encephalopathy); diagnosis and management’ published in August 2007.

2.       The related ‘National Institute for Health and Clinical Excellence Centre for Clinical Practice Review consultation document’ dated 1 November 2010.

 For the reasons listed  below , I  am   greatly  concerned that Clinical Area 1, case definition, concludes that "no conclusive evidence was identified that would invalidate current guideline recommendations. " that  Clinical  Area 3, management,  concludes that : "There is currently no new published evidence that would invalidate current guideline recommendations ." 

• the competing interests of the original GDG members were undeclared
• the patients to whom the Guideline is meant to apply were not defined: the Guideline does not describe or distinguish the neurological disorder ME/CFS from “medically unexplained chronic fatigue” (a classified somatoform disorder)
• patients were sent the Evidence Review, a massive 487 page document, only four weeks before receiving the Questionnaire on April 7th 2006,which had to be returned by May 5^th
• the Questionnaire only concerned itself with 18% of the issues under discussion, so the consultative process did not involve the full range of relevant issues. Misleading instructions to questions 29-61 made it likely that answers to those questions were erroneous. Out of a probable ME population of 240 000 patients, only 219 responses to the Questionnaire were considered, of which only 119 were from patients
• NICE failed to include experts from all the relevant professional groups on the Guideline Development Group
• Patients' / carers' views were not given equal weighting and status, as subsequently confirmed by two members of the GDG
• NICE entirely failed to heed the submitted evidence and disregarded the published dangers of GET for patients with ME/CFS who have cardiovascular and respiratory problems
• By limiting their consideration of the literature to that which supports the psychiatric paradigm of ME/CFS, NICE exhibited intrinsic psychiatric bias and failure to take account of the available published biomedical evidence about ME/CFS (over 5000 papers), without knowledge of which the Guideline fails to provide an aid to diagnosis (as was its remit)
• The sole management recommendations, which are to be implemented across the nation, are based on weak and inconclusive studies of dubious quality on heterogeneous groups of people, the majority of whom are unlikely to have ME but may have suffered from any one of over 30 other disorders where "fatigue" is a symptom
• The guideline was not based on a full and true picture of the severity of the illness and symptoms and itself concedes that its management strategy cannot be recommended either for the severely affected or for children
• The Guideline's conclusions did not coincide with  the majority professional view of the international medical and scientific communities about ME/CFS
• The Guideline  compromised the reality of ME/CFS by remaining  irrationally equivocal about the WHO classification of ME/CFS as a neurological disorder
• NICE confused "CFS/ME" with other fatigue states and has married  together two opposing views -- the psychiatric model which says "unhelpful illness beliefs", "thoughts, feelings, behaviours" and "over-vigilance to symptoms" perpetuate the illness, and the biomedical model.  This has led to a flawed document that meets no-one's real need
• There are proven vested interests in portraying ME as a psychiatric syndrome, as opposed to a seriously debilitating  physical illness, with multi system dysfunction,  as highlighted by Ian Gibson MP in his Inquiry (2006)
• The  GDG was selective in the symptoms listed (i.e. emphasising psychosocial symptoms whilst ignoring primary biomedical symptoms)
• People with ME/CFS have been shown to be extremely sensitive to pharmacotherapy; this is denied in the Guideline, which is a complete rejection of the patients' experience as well as the scientific evidence
• NICE placed unreasonable upon the seriously flawed and biased Systematic Review of the literature carried out by the Centre for Reviews and Dissemination (CRD) based at York. The York Review has research misconduct as one of its hallmarks, and this was brought to the attention of NICE but was ignored
• The actual number of studies on which NICE relied to support its management recommendations is very small and therefore inadequate for these studies to be used as the "evidence-base" of the safety and efficacy of the regime recommended for implementation nationwide
• NICE recommended  that laboratory tests which in other countries have established the organic nature of ME/CFS and which point to potential therapeutic interventions should be specifically forbidden in the UK
• NICE disregarded the fact that patients are almost universally opposed to CBT and to GET, because survey after survey has shown that GET can be harmful to people with ME. 
• NICE recommends  "CBT and GET "because it  believes that  "currently these are the interventions for which there is the clearest research evidence of benefit."(1.6.2.4). However, this “research”  (seven Random Controlled Trials (RCTs) of CBT and four RCTs of GET) is at "best inconclusive and at worse non-existent.  When measured objectively, the CBT trials delivered no statistical change. Regarding the graded exercise therapy (GET) trials,only two  RCTs   had positive results, but after 24 weeks there were no benefits at all    
• There is no process in the Guideline to distinguish between when a patient with ME/CFS is extremely ill and when they are no longer so ill and may  be able to cope with gentle rehabilitation
• NICE has produced Guidelines for 19 different clinical conditions. Only in the case of the organic disorder ME/CFS is CBT recommended as the primary treatment of choice. 

Breakthrough Prayer Circle 9pm BST Nov 13th

We pray tonight for genuine hope that there will be a change in attitude and  Government policy towards biomedical research into ME and a proper biomedical service for all. We keep in our hearts and minds especially at this time the review of the NICE Guidelines and Professor Hooper's formal complaint to the MRC :


http://www.angliameaction.org.uk/docs/willets-hooper-pace.pdf


May truth, justice and integrity prevail.


Lord 
we ask for Healing
we ask for Hope
we ask for Strength
we ask for Wisdom
we ask for Knowledge
we ask for Discernment
and Your Light to shine brightly
on all injustice and untruth
surrounding ME
we give you thanks
knowing that You hear us
and trust that goodness will prevail.
Amen


And we continue to  pray the Breakthrough Prayer , with absolute trust and hope in our hearts. Amen.

Deadly Spin

Deadly Spin: An Insurance Company Insider Speaks Out on How Corporate PR is Killing Health Care and Deceiving Americans


Greg Crowhurst 8th Nov 2010
(permission to repost) 


I burned the dinner last night, so enthralled  was I by Time magazine's ( Nov 15 p. 20) review of Wendell Potter's Deadly Spin: An Insurance Company Insider Speaks Out on How Corporate PR is Killing Health Care and Deceiving Americans,  which is finally  out this week : Nov 9th.


Flinging open all the windows, trying to get rid of the smoke, I was praying that  a lot more smoke and fire will be generated by this  blazing expose of the medical insurance industry.


  Potter, according to Time  : 


"exposes how corporations manipulate public opinion in the service of shareholders ,forming  front groups, touting misleading studies and enlisting sympathetic media types to further their causes."


..It was like reading our life story. For anyone with ME, these words put in a nutshell all that is so wrong . Everyone knows that it  precisely because of the power of the Medical Insurance lobby  that  we have the CDC and Oxford definitions, that we have the nonsense term : "CFS",  that we have   CBT and GET,  rather than a physical cure.We  all know this.


But how hard to talk to anyone about what we know ,  without hearing oneself sound like  a crackpot  conspiracy theorist. Well maybe from this week, it will be easier to have that confabulation.


As Mercurio states :


"What’s truly novel about Deadly Spin is that it provides an inside look at how health insurance industry spinmeisters mobilize to justify the actions of health plans that deny care, to discredit supporters of healthcare reform, and to position the industry as “part of the solution” to our healthcare problems.  The formula: extensive use of industry-funded front groups, fearmongering campaigns, disinformation and reliable industry allies (third-party advocates and pundits) to disseminate pro-health plan messages that can’t be traced to insurers." http://blog.corporateresearchgroup.com/2010/10/26/book-review-confessions-of-a-health-plan-pr-hit-man/

One example  Potter gives concerns  the use of PR firm APCO Worldwide  who were  recruited by insurance giant Cigna , “to place stories with reporters, editors, and producers it had good relationships with and to get ‘third parties’ to convey Cigna’s messages.”after a 17-year-old health plan member died of cancer , because she was  denied coverage of a liver transplant.

He also describes how the industry   hired PR firm Porter Novelli to set up  the Health Benefits Coalition, which effectively killed the Patients Bill of Rights in the late 90's.

Who are these people, I have often wondered, who cause so much suffering ??? Potter's description is harrowing :

"I didn’t feel then that we were doing anything unethical or underhanded.  We were all well read and well educated….We all wore nice clothes and ate at the best restaurants and had kids in good schools and houses in the right zip codes.  We knew people in Congress and the White House.  We talked every day to reporters at the Wall Street Journal and the New York Times.  We were powerful and influential….The American dream didn’t get any better than this."

In a House of Lords debate last year (March 18th 2009) the Countess of Mar quoted this from Health Insurance News (http://www.meassociation.org.uk/?p=582) :

“Medical Insurance May Not Cover Chronic Fatigue”,

"it gives a condensed description of ME. It then states:

“This sounds like a physical problem, doesn’t it? However, the NICE guidelines suggest that it is a psychiatric condition rather than a physical one.”.

"It goes on to say:

“Because of the NICE guidelines private health insurance companies are within their right to refuse cover if an applicant’s policy does not include psychiatric cover”.

"I cannot find any confirmation for the extraordinary suggestion that ME is a psychiatric condition in the NICE guidelines. Will the Minister ensure that this misinformation is rapidly withdrawn?"

The Countess of Mar then  added: 

"I have been dealing with ME sufferers for 17 years and I have never encountered a group of patients who are so maligned. The last straw for them is the requirement that they undertake a course of CBT and/or GET in order to qualify for benefits and private insurance payments.

Replying to the debate for the Government, Baroness Thornton said:

"The noble Countess, Lady Mar, made a very interesting and well informed speech about CFS/ME, whose sufferers she has championed for many years. I will be pleased to investigate the issues that she has raised about CFS/ME treatment, recommended by NICE. It is important to restate the value which the Government place on the independence of NICE’s evaluation process, but I undertake to follow up the disturbing point she made and see whether I can provide her with clarification."

 Well, we  can only  hope that Baroness Thornton, now Opposition Spokesperson for Health and for Equalities Office ,  reads  Deadly Spin ! For, as Anne Landman explains, it  reveals all :

"The book details disinformation campaigns that health insurers use to cover up their misdeeds and manipulate public policy, reveals insurers' public relations tricks, like commissioning bogus scientific studies, working through fake "grassroots" organizations, and disseminating rhetoric designed to scare the public. (Think phrases like "socialism" and "death panels," that Wendell reveals were created by health insurance companies.) Wendell tells about the methods insurers use to "dump the sick," discusses the skyrocketing premiums and high deductibles that are putting health care out of reach for working people, and discloses the outrageous salaries that insurance companies executives make while denying care to patients. "http://www.prwatch.org/node/9571

Wedding Anniversary

Today is our 17th Wedding Anniversary; it's 2 pm.

At three we will light the candle we first lit 17 years ago, in the Church where we got married , renew our commitment to each other and send light down the year.

It is two pm. All day Linda has been lying in  deep physical  torment .

It's Saturday.

On Monday , the psychiatrists will go to their multi-million pound clinics  and spread their multi-billion dollar lies about ME.

Breakthrough Prayer Circle 9pm BST Nov 6th

Breakthrough Prayer Circle 9pm BST  Nov 6th 2010


Boundaryless,
I float
in a sea of
emptiness
I feel less than real
I know less than before
I am physically limited
yet limitless
I am immersed in God
I flow with Him
He saves me
from nothingness
I am complete in Him
He holds me
and I am someone
He loves me
and I am alight with love
He heals me
and I am at peace.

Linda Crowhurst

A Prayer for this evening :

We thank you for this time
to come together in prayer
May we find healing today
and hope for the future
Lord may the power of the Spirit
uplift and inspire us all
may it change hearts and minds
and bring radical change
to the current  oppression 
of people  with  ME.



We add this prayer to the Breakthrough Prayer , it is so important that we keep asking, keep hoping, keep praying that change will come and soon. Every time we pray we link to Love and it is this love that will transform all and it is because of this love that we know our prayers are heard and perfectly answered.

If you can, do join us at 9pm.

Rehabilitation is not synonymous with Recovery....

"Rehabilitation is not synonymous with Recovery...."


Two otherwise hidden moments in a carer's life yesterday . Reading the quote above, from Barbara Wilson, University of Cambridge,  in Time magazine and going "Wow", for it was like stumbling across the meaning of the mysteries,  then shortly afterwards lying with  my wife on the bed; it's  early afternoon and we  aren't  going anywhere.


 My wife  doesn't know how to cope with the pain she is in  a second longer.


..That's us.


ME patients are continually denied physical treatment, the orthodoxy is to administer CBT and GET - rehabilitation, while not dealing with the underlying disease process. Of course my wife has all manner of things going wrong in her body, her physical suffering day to day , her quality of life is  petrifying. 


Alcoholism, you know,  is even treated as a physical disease , but ME , flying in the face of any measure of reason is still put down to wrong thinking.


Just  take  this from the superb CFS Untied  :

"Miller also proudly announced the new CDC/CFS website and it’s many updates, including a new Toolkit for state, city, and local health officials.  Most of us have already been to the website and found an abomination of CBT and GET recommendations – including a link to the GET program at St. Bartholomews (Professor Peter White), a notation that the pain of a CFS patient does not require narcotics, and the very first link on the top center of the page brings us to the Childhood Risk page….which talks about childhood abuses and how they can precondition the brain to not deal appropriately with stress.

Part of the toolkit treatment section includes the following statement:

If CBT is not covered by insurance, people with CFS can substitute a provider who is knowledgeable about CFS. This provider can lead CFS patients to understand how their behavior is impacting the illness, and set up activity and exercise programs that are useful."

http://cfsuntied.com/blog2/2010/10/19/%E2%80%9Cdo-we-have-standards-of-course-we-do%E2%80%9D/

The quote I began this with about rehab  from Time magazine (Nov 1 2010 p. 45),  refers to Sensecam, a Microsoft device to help people cope who have lost their memory. At best, all rehab in ME can do - the "activity and exercise programs "  the CDC go on about ;  though certainly not in the way they recommend their use - to change "sickness beliefs" ,   is  to help someone maybe  cope a little better- even then, as the research consistently   shows, it is much more likely to make the severely affected, like my wife,  a lot ,lot more ill. 


Those precious words , that so succinctly sum up everything we know about the current approach to ME : Rehabilitation is not synonymous with Recovery...."need  to be emblazoned across the chest of anyone  who sets out to implement a CBT and GET approach


People will never be helped and I will explode with exasperation one day,soon, 
if ME is not treated physically.


 Listen , though, to this prize quote from the CDC - again on CFS Untied :

"Dr. Elizabeth Unger, Acting branch chief, CFS branch, CDC

Dr. Unger reiterated that there is nothing wrong with the Reevesian implementation of the Fukuda definition, it’s just that we don’t understand how the CDC is using the definition, and that we need to be made aware of that.  Dr. Unger said the same thing in May.  During the interim 5 months, there has been no effort to explain their usage to us, so we are still waiting.  She did, however, say that… “The day of a simple cfs patient versus control situation is probably over and we need to have cfs with a dimensionality…”

What in the name of all that is sensible and sane , does the prospect of  "cfs with a dimensionality…" mean ?? Read it and shudder..


... then do all you can to jettison that abhorrent "CFS" label from your life.

Ride the wave !

Ride the Wave !


My day started long before dawn yesterday, with Linda so ill on so many levels ,it was all I could do not to explode with not knowing how to help her, with my helplessness in the face of overwhelming suffering.


Of course I could not attend the demo in London;but looking at the pictures last night I had to wonder would I have crossed the street and joined in  ? With great respect and all credit to those who struggled, at who knows what cost to get to London  , I really do not want the see the one  I love  portrayed  as Micky Mouse or as  an object of contamination .


A friend has emailed to say they hope passers by were not confused by the message being given out.


That said, there is something wonderfully uplifting  about  those pictures on standup2me, the XMRV issue does seem to have  come over and there is  a  strong,positive  presence that you can feel.


The imagery issue though cannot be ignored. It's estimated that 40 protesters attended - but how many more were put off by the inappropriate mouse ears ? Maybe we can all learn something from this ??   


What  gives me great hope today  is the wave of protest that now seems to be sweeping through  the ME Community  , particularly exemplified on :


http://standup2me.blogspot.com/2010/11/92-me-blood-ban-protestuk-policy-change.html

with its  message  :


Dear …...,

"Stop allowing policy to support the refuted psychiatric model of ME/CFS, which presumes that ME/CFS has no organic basis and is therefore contradictory to current science and research on XMRV and other viruses. Pledge to make a definitive policy change NOW. Patients and their families are waiting."

If you haven't already ,please do see the excellent , short,  XMRV Epidemic are you next ? 

Malcolm X  once said : truth is on the side of the oppressed, let's face it : with the  research figures suggesting  that perhaps 10 million people in the United States, and hundreds of millions worldwide, could be infected with  a blood-borne virus for which the pathogenic potential for humans is  still unknown, with the evidence that people have contracted ME/CFS  after receiving a blood transfusion (De Meirleir et al, 1999), with all that is about to literally  explode  on XMRV next year ,  the truth that illnesses like ME have to be taken seriously , is now  completely overwhelming .