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Severe ME - book out soon .

Severe ME (2nd Edition), greatly expanded and updated,  featuring contributions from Clinicians, Advocates, People with Severe/Very Severe ME and Carers, all around the world, is coming out soon !

http://www.stonebird.co.uk/new/soon.html

Unbearable !!

The neglected,untreated, ignored, tortured, tormented  reality 

of Severe ME, of my wife's life,  is utterly unacceptable !!

Today cannot be put into words it is so horrible, such an agony without end.

Who knows ?

There is currently no treatment, no cure, no hope. Just this cycle of worsening symptoms and deterioration.

Today is unbearable. 

But bear it, my wife must.

Thomas Hennessy : a prayer for all who are grieving

I understand that it is Thomas Hennessy's funeral today .

Someone posted here the other day that Diana Krall's version of  "Just the Way You Are" was a special song.  So poignant.

"A prayer  for all who are  grieving :

We place everyone who knew Thomas Hennessy or whose lives were touched by his great work in the Heart of Love where all healing is found and from whence all mercy flows.

May we all  be comforted, consoled, strengthened and blessed in this moment and all moments of grief. May the pain of loss be tenderly eased in the knowledge that Tom  now lives with God  and may this knowledge grow and relieve the deepest suffering of loss.

Amen"

(from Unstoppable Spirit)


A tribute to Thomas Hennessy

I will never forget what a difference it made when Tom emailed, out of the blue, this giant and said that Stonebird was "EXCELLENT" - his words !

As a tribute I have just built this webpage : it turns out to be the most powerful webpage I have ever built ! 

Such incredible quotes from a legend, a man we all owe so much to.

http://www.stonebird.co.uk/tom/index.html

How to Care, really Care, for Someone with Very Severe ME


Poor care practice combined with a lack of understanding,  knowledge and insight into how to approach someone profoundly physically ill, with acute, multiple environmental hypersensitivities, places people with Very Severe ME at particular risk of abuse and harm.

The  impact of any intervention, which can be catastrophic, makes Very Severe ME a  complex illness in which to provide safe and sensitive care.

This document is intended to increase awareness and to help raise standards of care.

Letter to Secretary Sebelius

(This is a copy of an email I sent to the US Department of Health and Human Services Secretary Kathleen Sebelius)

Dear Secretary Sebelius,

I am writing to state how unacceptable it is that the HHS is proposing to contract with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome", without input, apparently from people with ME.

People with ME are dying from this disease, my wife who has had Severe ME for the last 20 years lives a life of unimaginable physical agony, without hope of treatment, cure or even basic respect.

That is because  ME is currently being wrongly  misrepresented and misinterpreted as CFS, a fatigue condition with treatable sleep, pain and fatigue using psychiatric interventions that are harmful to people with ME, because they deny their physical reality.

People with ME experience severe multi-system dysfunction and serious symptoms- these typically include :

Dysfunctional immune system .
Problems of oxidative stress .
Cardiac abnormalities.
Neurological abnormalities.
Disturbance in the hypothalamic -pituitary-adrenal axis.
Various muscle abnormalities.

Prevalence is high,epidemiological studies suggest that ME is more prevalent than multiple sclerosis, systemic lupus and HIV infection,with an annual estimated cost to the US economy of 19-25 billion dollars a year. 

What a waste of taxpayer's cash not to make every effort to development stringent, proper, best-practice, biomedical,  clinical guidelines.

I understand that the  HHS refuses to accept the internationally acclaimed CCC or the ME-ICC definitions of ME and even questions the hallmark symptoms of ME, confounding it with depression, deconditioning and non-specific chronic fatigue. If you spent five minutes with my wife, witnessing her physical suffering and endless torment  you would change your mind, I am sure.

It is vital that any criteria for ME are medically validated, that ME is  fully acknowledged as a Neurological Disease and that ME is separated from mental health Chronic Fatigue and primary psychiatric input.

In the face of such a serious physical illness, I do not understand how the HHS  is apparently so  dismissive of the  CFSAC's recommendation that a clinical and research case definition be developed in unison, that the effort begin with the Canadian Consensus Criteria and most importantly, that it be developed by disease experts only.

I strongly urge the HHS to abandon its plan for this ill-advised,wasteful, and unscientific initiative.

Yours sincerely,

Greg Crowhurst RNLD, PgDip, MA

Forget CBT - it's DBT.


Eleanor Stein has posted an interesting article on Co Cure,however I read it with growing  unease. Perhaps it is  her suggestion that health care professionals model their intervention upon Dialectical Behaviour Therapy. I looked it up.

DBT is derived from helping individuals who have : "Borderline Personality Disorder" to accept "their dire level of emotional dysfunction", according to Wikipedia.

Apparently : " the therapist aims to accept and validate the client’s feelings at any given time, while, nonetheless, informing the client that some feelings and behaviors are maladaptive, and showing them better alternatives".

That is not the-overt- message of the article. There is no reason, I can see, to mention DBT in the first place.

Why on earth can people with ME not enjoy an honest encounter with a health professional without some kind of behaviour therapy going on ?


 http://eleanorsteinmd.ca/wp-content/uploads/downloads/2013/09/Improving-Therapeutic-Relationships-Sept-2013.pdf

Our BJN Response on the PACE Trial

Re: College was right not to disclose deliberations about chronic fatigue treatment trial, tribunal rules.
Greg Crowhurst
Greatly criticised by the ME Community and virtually all ME Charities, the PACE Trial allegedly :
1. Brought together (conflated) two diseases that the WHO rightly categorizes separately-neurological "ME/PVFS" (ICD-10-G93.3) and psychiatric "Fatigue Syndrome" (ICD-10-F.48.0) - and misrepresented the latter as the former. (Hooper 2011)
2. Mixed at least three taxonomically different disorders in the trial cohort-those with ME/CFS (ICD-10 G93.3), even though the entry criteria exclude such patients; those with fibromyalgia (ICD-10 M79.0) and those with a mental/behavioural disorder (ICD-10 F48.0). (Hooper 2011)
3.Excluded children and those who are severely affected. The results of any trial that excluded those who are severely affected cannot be taken seriously. (Hooper 2011)
4. Included, (PACE Trial) a large number of participants, 47% - who were found to be suffering from one or more psychiatric disorders.
5. Took no biological measurements. Studies of CBT in other conditions including HIV/AIDS and cardiovascular disease, routinely collect data on immune markers or other biological measures in an attempt to understand how and why CBT works in the context of the condition studied.
6. Abandoned the use of an actometer, an instrument to measure activity , which would have provided unequivocal objective evidence of improvement or non-improvement.
7. Found that "pragmatic rehabilitation" (based on CBT/GET) was minimally effective in reducing fatigue and improving sleep only whilst participants were engaged in the programmeand that there was no statistically significant effect at follow-up.
8. Did not conclude CBT/GET/PACING were even cures for the loosely defined CFS or even "effective" treatments for it; they said they were "only moderately effective".
9. Did not return the participants to their health or even close to it.
10. The only reported improvement, an increase of being able to walk an extra 20 steps, cost the nation £5 million.
Every study of CBT and GET, including my own (Crowhurst 2005) reveals that the pacing protocol recommended by the PACE Trial - based on the premise that patients need to change their maladaptive "illness beliefs" is incredibly harmful to people with ME. Some patients have been rendered bed bound for years as a result.
The ‘psychosocial ‘model used to influence ME service provision, one which emphasises “beliefs, coping styles, and behaviours”, colours the perception of Myalgic Encephalomyelitis (ME) right across the board in the UK, from the 2007 NICE Guideline, to the policy of government agencies such as the Department of Work and Pensions and NHS Plus has cost us dearly.
My wife who was Severely Affected has now been diagnosed with Very Severe ME, her life is one of constant, indescribable suffering, yet she is simply left to get on with it; it has been twenty years now with no treatment, no research, no cure - and no hope. This is a gross injustice.
That is why these outcome measures matter so much to us ; it is no exaggeration to state that it is very much a matter of life and death .
References
Crowhurst G (2005) One of the biggest medical scandals in history : a survey of those most severely affected by ME/CFS. Submission to the Parliamentary Inquiry into progress in the scientific research of M.E., by the 25% Severe ME Group http://www.25megroup.org/.../25%25%20submission/25%20final%20sub%20to%20Gibson%20(2).doc
Hooper M (2011)Report: complaint to the relevant executive editor of the lancet about the pace trial articles published by the lancethttp://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.htm
Competing interests: None declared