Wednesday, 25 December 2013

Christmas Day

A Very Happy Christmas to readers of my blog!

From the Bible, Matthew chapter 1 verses 18 – 25 -

Now the birth of Jesus Christ was on this wise: When as his mother Mary was espoused to Joseph, before they came together, she was found with child of the Holy Ghost. Then Joseph her husband, being a just man, and not willing to make her a publick example, was minded to put her away privily. But while he thought on these things, behold, the angel of the Lord appeared unto him in a dream, saying, Joseph, thou son of David, fear not to take unto thee Mary thy wife: for that which is conceived in her is of the Holy Ghost. And she shall bring forth a son, and thou shalt call his name JESUS: for he shall save his people from their sins. Now all this was done, that it might be fulfilled which was spoken of the Lord by the prophet, saying, Behold, a virgin shall be with child, and shall bring forth a son, and they shall call his name Emmanuel, which being interpreted is, God with us. Then Joseph being raised from sleep did as the angel of the Lord had bidden him, and took unto him his wife: And knew her not till she had brought forth her firstborn son: and he called his name JESUS.”


A Hymn - 

THE Son of God, in mighty love,
Came down to Bethlehem for me,
Forsook His throne of light above,
An infant on the earth to be.

In love, the Father’s sinless Child
Sojourned at Nazareth for me;
With sinners dwelt the Undefiled,
The Holy One in Galilee.

Jesus Whom angel hosts adore,
Became a man of griefs for me:
In love, though rich, becoming poor,
That I, through Him, enriched might be.

Though Lord of all, above, below,
He went to Olivet for me;
He drank my cup of wrath and woe,
And bled in dark Gethsemane.

The ever-bless├Ęd Son of God
Went up to Calvary for me:
There paid my debt, there bore my load
In His own body on the tree.

He finished all! the veil was rent;
Salvation now is sure and free;
I leave behind my banishment,
O Father, to return to Thee!
               
Horatius Bonar, 1808-89


A Poem - 

Is This The One?

Is this the One, this Babe laid in a manger,
Is this the One of whom the prophets spoke,
This Child taken to Egypt from great danger
This Child who made His home with humble folk?

Is this the One upon the lonely hillside,
Leaving the crowds to spend the night in prayer;
He who the priests and Pharisees derided,
Will He God’s saving purposes declare?

He came, not as a king to free the nation
To bring deliverance from Roman rule.
He came to bring a different salvation,
Deliv’rance from an enemy more cruel.

So long had man been held in sin’s hard bondage,
So long had fearsome death held men in fear,
So long had God’s great promise stood, to engage
In battle, and in victory appear.

And so the Saviour came, and by His dying
Paid penalty for sin, defeated death;
With His own life man’s full salvation buying,
Cried, “It is finished” with His dying breath.

Finished the reign of sin and death and sorrow,
For all who trust in His redeeming blood;
Opened the way to life and joyful morrow,
In heaven’s eternal day where all is good.

There reigns the risen Saviour, place preparing
For all His people to be with Him there:
There in His vic’try and His glory sharing
In beauty, joy and love beyond compare.

© Jean Stapleton 2013


For God so loved the world, that he gave His only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life” (John 3 v 16).

Saturday, 7 December 2013

ME on TV

On the 4th December 2013, on “The People’s Voice” online TV channel, journalist Sonia Poulton interviewed Jane Colby (of the TYMES Trust) and Rebecca Hansen (of the ME Association in Denmark) about ME and, in particular, about the abuse of people with ME both in the UK and abroad.  It centres on the case of a young lady in Denmark who has been removed from her home and is being held in hospital against her will and that of her family.  It also includes details of why ME is not just “chronic fatigue”.  The interview lasted around 20 minutes and is well worth listening to; it’s quite an eye-opener as to what is going on.
 
The interview is available to watch on YouTube – click here
 

Friday, 6 December 2013

Out of Hours Chronic fatigue syndrome: a patient’s perspective

British Journal of General Practice
https://twitter.com/ollie72/status/406845530673651712/photo/1/large  

(Apparently ME was originally used in the title, but it was unfortunately changed to CFS –
https://twitter.com/ollie72/status/407444271676260352)

In 1999 I contracted a throat infection that receded after many weeks, but I was still unbelievably exhausted with the most intense flu-like malaise. Two years later I was diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and joined the 240,000-plus people in the UK with this Illness. I assumed that a diagnosis would lead to effective treatment, but I was in for a shock.

Initially my GP suggested I see a psychotherapist. It seemed a strange recommendation, but I trusted his judgement and decided to see if this would help. Unfortunately it had no impact at all on the illness. My GP then referred me to an endocrinologist who boldly announced that, as the test results were all normal, everything was fine and offered to prescribe antidepressants. I was deeply frustrated by the suggestion that clear test panels meant I should be treated as a depressed patient. I was not inclined to agree that antidepressants were the best treatment when my experience of the symptoms was closer to that of an infection than a mood disorder. In fact, I have been told a number of times that I’m simply depressed, or that I am de-conditioned and just need to exercise. I wouldn’t mind if either diagnosis were true, as there are effective treatments available, but they are inadequate explanations.

CFS/ME waxes and wanes but also causes post-exertional malaise: when patients go beyond their usual (restricted) activity level they suffer a worsening of symptoms which can be severe. Patients often refer to this as a crash. For me this can mean being bedridden for weeks with muscle weakness, dizziness, loss of appetite, and indescribable physical and mental exhaustion. It’s worth noting that my GP has only ever seen me when the symptoms are at the lesser end of the scale. During a crash I am too ill to leave my bed, let alone travel to the surgery.

When I first got sick, CFS/ME seemed to be largely treated as a mysterious psychological condition, with doctors encouraged to limit the number of tests done, and with patients left to self-manage. Since then things have improved a little in that there are fatigue clinics in some areas, but the overall treatment situation remains poor, with most patients receiving little or no effective treatment through the NHS.

The PACE trial is the largest study performed into CFS/ME treatments, primarily cognitive behavioural therapy (CBT) and graded exercise therapy (GET). I think the £5 million cost would have been better spent on immunological studies, exercise physiology testing, and understanding the disease mechanisms. A recently published PACE trial paper reported on ‘recovery’ rates.(1) However, the letters published in response to the paper show that the study’s post-hoc definition of ‘recovery’ was seriously flawed, and so much looser than the recovery criteria outlined in the trial’s protocol that the ‘recovery’ outcomes bear no relation to what an average person, or clinician, would define as recovery of health. PACE was an un-blinded study and the primary outcomes were all subjective self-report measures at risk of response bias. Changes from the trial protocol (2) also meant that it was easier for patients to be classed as improved, yet even then the addition of CBT and GET to specialist medical care led to only an extra 11-15% of patients reporting improvement.(3) This simply underscores the need for more research across all areas to find effective treatments.

CFS/ME presents difficulties for both patients and doctors, reinforcing the need for them to work together in partnership. A recent BMJ editorial (4) entitled Let the Patient Resolution Begin could not have said it better:

“… health care won’t get better until patients play a leading role in fixing it.”

Ollie Comes,
Software engineer, London.

REFERENCES
1. White PD. Goldsmth K. Johnson AL. et al. Recovery from chronic fatigue syndrome after treatments given in the PACE trial Psychol Med 2013 40»10»: 2Z27-223S.

2. White PD. Sharpe MC. Chalder. et al Protocol for the PACE trial: a randomised controlled trial of adaptive pacing. cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patents with the chronic fatigue syndrome / myalgic encephalomyelitis or encephalopathy BMC Neurol 2007; 7: 6

3. White PD. Goldsmith KA Johnson AL, et al. Comparison of adaptive: pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medcal care for chronic fatigue syndrome (PACE): a randomised trial Lancet 2011 377197681:823-836.

4. Richards T, Montori VM, Godlee F.et al Let the patent revolution begin BMJ 2013 346: f2614.

Monday, 2 December 2013

O Little Town Of Bethlehem

A favourite Christmas Carol for the start of December –

O little town of Bethlehem,
How still we see thee lie!
Above thy deep and dreamless sleep
The silent stars go by:
Yet in thy dark street shineth
The everlasting Light;
The hopes and fears of all the years
Are met in thee tonight.

O morning stars, together
Proclaim the holy birth,
And praises sing to God the King,
And peace to men on earth;
For Christ is born of Mary;
And, gathered all above,
While mortals sleep, the angels keep
Their watch of wondering love.

How silently, how silently,
The wondrous gift is given!
So God imparts to human hearts
The blessings of His heaven.
No ear may hear His coming;
But in this world of sin,
Where meek souls will receive Him, still
The dear Christ enters in.

O holy Child of Bethlehem,
Descend to us, we pray;
Cast out our sin, and enter in;
Be born in us today.
We hear the Christmas angels
The great glad tidings tell;
O come to us, abide with us,
Our Lord Immanuel.

Phillips Brooks, 1835-1893

Friday, 22 November 2013

INCORRECT GOVERNMENT INFORMATION COULD BE HURTING CHRONIC FATIGUE SYNDROME PATIENTS, NEW RESEARCH FINDS


PRESS RELEASE: NEW YORK, NY (11/20/2013) – An untold number of New Yorkers, perhaps well over 100,000, who have been diagnosed with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS) could be at risk of relapsing and exacerbating their condition due to a course of a treatment suggested to them by the federal government, according to groundbreaking new research.

At a medical conference today sponsored by the New York ME and CFS Center at Mt. Sinai and held at the New York Academy of Medicine, researchers showed that a form of treatment called Graded Exercise Therapy (GET) which has been lauded by the UK’s National Institute of Clinical Excellence (NICE) and recommended by the U.S. Centers for Disease Control and Prevention (CDC) may not help ME/CFS, but actually can make it worse. Unfortunately, the CDC has long been touting that certain exercise regimens can help manage the disease, even offering guidance on their website.

Dr. Derek Enlander, Dr. Eric Schadt, Dr. Miriam Merad, Dr. Christian Becker and a team of researchers at Mt. Sinai Medical Center have discovered new research on ME/CFS that could change the way the disease is treated. Their research shows that the disease is tied to the immune system much more than originally thought. A recent study showed patients can actually relapse when they partake in excessive exercise, and other therapies maybe more effective.

“We want to raise awareness about this disease, how it affects the body and the best way to treat it,” Dr. Enlander said. “For too long, this disease has been misunderstood, leading to a poor quality of life for far too many patients. We hope to change all that.”

Myalgic Encephalomyelitis was first identified in the mid-1950s, by Dr. Melvin Ramsay of London’s Royal Free Hospital, after being suspected of outbreaks dating back at least two decades’ prior. What is thought to have been an outbreak in Nevada’s Incline Village in the mid-1980s, mirroring one in rural upstate New York’s Lyndonville, led to the CDC officially recognizing a condition reduced Chronic Fatigue Syndrome in 1988 following the elimination of the Epsten-Barr virus as a potential culprit. The CDC has displayed an inconsistent track record ever since, diverting millions of dollars earmarked for research in the disease to other causes in a scandal uncovered some 15 years ago. Recent estimates suggest that hundreds of thousands of people in the U.S. suffer from CFS, although the CDC is thought to have both underestimated the severity of the disease, while overestimating the numbers, as they have reported a disease prevalence of 2.54% in the U.S. This figure is not accepted by experts in the field. Using the more-accepted figure of 0.4% would estimate the number of sufferers in the New York City Metropolitan area alone at over a half million patients, the majority of whom are likely undiagnosed.

The illness which afflicts women to a greater degree than men, causes severe immunologic dysfunction, profound loss of energy (sometimes referred to as fatigue, though in many cases patients would report that this term is inadequate as a descriptor), sleep disorders, neurological disturbances, pain, and other symptoms. Underlying causes and treatments for CFS have been elusive, but new research is shedding light on how the disease works.

Media Contact: Andrew Moesel


Wednesday, 20 November 2013

SAYING NO CAN BE POSITIVE

This document was produced by The Grace Charity for ME and is reproduced here with their kind permission.  It can be found online as Word and PDF documents.

SAYING  NO CAN BE POSITIVE  Spring 2006 (updated 2013)

The following has been designed to support M.E. sufferers who choose to not attend the current NHS Chronic Fatigue Syndrome/Myalgic Encephalomyelitis clinics, set up across the country. These clinics have been based upon the Chief Medical Officer’s report from 2002 and consist mainly of psychological therapies such as Cognitive Behavioural Therapy and Graded Exercise Therapy. This document may also support M.E. patients who refuse to receive the treatments of CBT and GET recently recommended by NICE for CFS/M.E. and also by the PACE trials (Prof. Peter White et al.) Bedbound/housebound sufferers who are advised to have these therapies on domiciliary visits may also find this document helpful. It may also help those pressurised to undertake CBT and Graded Exercise Therapy by Private Health Insurers.

Those who wish to refuse psychological therapies for M.E. can be supported by the following facts:

1) The law protects patients from unwanted treatments if the patient is deemed to be mentally competent. Medical practitioners cannot give a treatment to a patient without the patient’s consent. 1   Scientifically, M.E. is NOT in Mental Health, see below.

2) An M.E. patient doesn’t have to comply with the recent NICE guidelines on CFS/M.E., supported by the above law, because M.E. is not scientifically in mental health.

3) The NICE guidelines, which support CBT and Graded Exercise Therapy for M.E., are not mandatory. In practise, GPs and all doctors do follow the NICE Guidelines: this is because all NHS organisations have a legal requirement to implement NICE guidance.  However, the treatment aspect is not enforceable.

I can clarify that NHS organisations are indeed expected (and in some cases, such as a type of guidance called Technology Appraisal guidance, legally obliged) to implement NICE’s recommendations. This is not the same as saying that the NHS has the power to force a patient to undergo a treatment which they do not want.’  2

Also,

NICE clinical guidelines such as CG53 are not legally enforceable.’ 3

4) M.E. patients have a right, under the NICE guidelines, to refuse the recommended treatments from NICE.

The following could be used to help M.E. sufferers who wish to refuse NICE’s recommendations of treatment:

Healthcare professionals should be aware that – like all people receiving care in the NHS – people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care.’  4

A patient’s care plan can include state benefits and social services care, which are now also linked with the NICE guidelines.

The NICE guidelines do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of each patient. Healthcare professionals should record their reasons for not following clinical guideline recommendations.

In other words, every patient case is individual and a doctor does have the right to express clinical freedom, along with consulting the patient, as to what is best. This may mean refusing Graded Exercise Therapy and CBT.

5) An M.E. patient who is in a comatose/semi comatose state cannot by law be forced into psychological treatment just because they have M.E.  5

6) Private Health Insurers cannot force an M.E. client to undergo unwanted treatment before making a payment, unless those treatments are specified in the contract. Unless the contract of a company states clearly that M.E. clients must undergo CBT and/or Graded Exercise Therapy before a payment is made, the company could well be in breach of contract. Also, every individual has freedom to express views as stated by The Human Rights Act 1998. If an insurance company ignores a client’s reasons for refusing CBT and/or Graded Exercise Therapy, a client could claim their ‘freedom of expression’ has been violated. 6   The following organisation may offer help, including a free telephone appointment for legal advice:

Disability Law Service
Ground Floor
39-45 Cavell Street
London
E1 2BP
Tel: 020  7791 9800

Email:  advice@dls.org.uk       Website: www.dls.org.uk  

7) An M.E. patient cannot have their state benefits withdrawn for refusing CBT and Graded Exercise Therapy.

Unfortunately, the NICE guidelines are now linked with the awarding of state benefits and Social Services care.

U.K. law says that if a patient refuses suitable treatment without good cause, benefits can be withdrawn.  7

However, CBT and Graded Exercise Therapy could be argued as unsuitable treatments for M.E. sufferers (see facts below). Scientific opinion which is against CBT and GET for M.E. can be used to obtain state benefits for sufferers.

In addition, NICE has written the following in its CFS/ME Guidelines:

‘Healthcare professionals should be aware that – like all people receiving care in the NHS – people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care.’ (This is also quoted in section number 4 of this paper. See Footnote 4 for reference.)

Although NICE Guidelines are now linked in with the awarding of Social Services care and State Benefits, the above quote can be used in favour of an M.E. sufferer’s refusal to undergo CBT and Graded Exercise Therapy.

If sufferers find themselves in a legal battle with their benefits, those who qualify for legal aid may find the following organisation helpful:

the Community Legal Advice Line Tel: 0845 3454345

8) M.E. is a neurological disorder. It has been classified as such by the World Health Organisation in the International Classification of Diseases since 1969. 8  Therefore psychological therapies could well be inappropriate.

9) M.E. has a strong medical history of being an organic disease. Dr.Gordon Parish is the curator of the Ramsey Archive, which is possibly the world’s largest collection of medical papers on M.E. 9   It includes detailed world-wide epidemics of M.E. since 1934 and the viruses which triggered the disease.

10) There are over 2,000 papers showing that M.E. is an organic disorder, according to Prof. Anthony Komaroff (Professor of Medicine at Harvard).  10

11) In November 2010, M.E. sufferers were banned from giving blood. NHS Blood and Transplant has said that the ban is a precaution to protect the donor’s safety by ensuring the condition of M.E. is not made worse by donating blood. They say that the move brings M.E. in line with other relapsing conditions such as Multiple Sclerosis and Parkinson’s Disease.  11  However, many people in the M.E. community feel that the ban is over the possibility of contamination from the virus XMRV, which has been shown in studies to be high in M.E. patients. (See research by The Whittemore Peterson Institute team, published in the journal Science 2009.)

12) Many tests exist in aiding a diagnosis for M.E. Therefore, using psychological therapies for ‘unexplained fatigue’ is inappropriate. Although diagnostic tests for M.E. are still being worked upon with promise, nevertheless many tests and procedures can be administered in aiding a diagnosis of M.E. These include the use of SPECT, MRI and PET scans, test for NK cell activity and endocrine abnormalities, Tilt Table Test, viral tests and many more. 12  Although these tests are rarely offered by the NHS for M.E., they have nevertheless shown evidence of physical abnormalities.

13) “Patients who improve after physical exercise programmes do not have M.E./CFS.,” says Dr. Byron Hyde, M.D. of the Nightingale Research Foundation for M.E. in Canada, who has studied M.E. since 1984. 13  Dr. Hyde stresses that M.E. is primarily a disease of the Central Nervous System.  14

14) Patients who respond well to CBT and Graded Exercise Therapy might not have M.E. due to the diverse criteria used. Some criteria focus on unexplained chronic fatigue only, omitting symptoms showing central nervous system involvement. There are at least ten definitions of Chronic Fatigue Syndrome, all of them different.   15  In the U.K., a frequently used case definition is the Oxford Criteria which includes patients with no physical signs and selects subgroups of patients with high levels of psychiatric diagnoses .  16  The PACE and FINE trials (funded by the Medical Research Council) use the Oxford Criteria.  17

15) The assumption that an M.E. patient can always do more is an erroneous one. There are overwhelming international research findings on M.E., which support multi-system involvement particularly of the immune, endocrine, cardiovascular and neurological systems.  18  Also, there is evidence indicating pathology of the central nervous system and immune system  19 and evidence of metabolic dysfunction in the exercising muscle.   20 Also, Dr. Jay Goldstein has demonstrated through SPECT scans the severely decreased brain perfusion of an M.E. patient 24 hours after physical exercise.  21 The Canadian Criteria (2003) states that the worsening of symptoms after exertion is a principal symptom of M.E.   22 Raised levels of noxious by-products of abnormal cell membrane metabolism, associated with exercise and correlating with patients’ symptoms have been demonstrated.  23

16) CBT and Graded Exercise Therapy can worsen M.E. symptoms. In a survey of 3074 M.E./CFS patients conducted between 1998 – 2001,  55% of patients said that CBT had made no difference to their illness, whilst 22% said CBT had made their illness worse. 16% of patients said that graded exercise had made no difference to their illness whilst 48% said it had made their illness worse. 24  A survey by the 25% ME Group (for severe sufferers) of 437 patients, demonstrated that of the 39% of group members who had used graded exercise, 95% had found this therapy unhelpful, whilst 82% reported their condition had been made worse by graded exercise. Some patients were not severely ill with M.E. until after graded exercise. In the same survey 93% of those who had undergone Cognitive Behavioural Therapy had found it unhelpful.  25

17) The CMO’s Report recommended CBT and Graded Exercise Therapy despite the objection of two patient support groups.  The patient support groups of BRAME (Blue Ribbon for the Awareness of ME) and the 25% ME Group refused to endorse the CMO’s Report of 2002 based on its recommended treatments of CBT and graded exercise. These support groups mainly represent the needs of severe M.E. sufferers and were part of the CMO’s Working Group. 

18) Medical Concerns have been raised about the CMO’s Report. The Journal of Chronic Fatigue Syndrome , mentions criticism by health professionals and the public of both the British and the Australian M.E./CFS guidelines. “These criticisms included claims of bias in the recommendations toward a psychiatric outcome and failure to understand the limitations of patients to perform exercise programs as well as many others.”  26

19) The NICE guidelines have received widespread condemnation. The recent NICE guidelines were NOT supported by the following registered U.K. M.E. charities: The M.E. Association, the 25%M.E. Group, Invest in M.E., and the Grace Charity for M.E. Also, the organisation BRAME did not support the guidelines outcome, despite the latter serving on the panel. There are many other M.E. groups who also condemn these guidelines. The NICE guidelines received so much criticism that NICE were taken to court by two M.E. sufferers in February 2009. Views from international researchers (e.g. Carruthers, Peterson, Lerner, Hooper and Drs involved with M.E. Research UK) regarding the potential negative effects of Graded Exercise Therapy and CBT, were not acknowledged in the Judge’s decision.

Also, the NICE guidelines group had no-one offering a biomedical aetiology (cause) of M.E: therefore, the disease M.E. was never properly addressed by NICE because researchers offering a biomedical cause were not allowed to serve on the guideline group.

‘’Most Independent M.E. charities and patient organisations have rejected the NICE guidelines...”  27

20) The PACE trials results in February 2011, promoting CBT, Graded Exercise Therapy and APT (Adaptive Pacing Therapy, a form of Graded Exercise) have also received widespread condemnation from M.E. patient groups and medical researchers.  28

21) The International Consensus Primer for Medical Practitioners 2012, states that PENE is a required symptom for a diagnosis of M.E. (Post-Exertional Neuroimmune Exhaustion).

‘PENE is characterised by a pathological low threshold of physical and mental fatigability, exhaustion, pain and an abnormal exacerbation of symptoms in response to exertion. It is followed by a prolonged recovery period. Fatigue and pain are part of the body’s global protection response and are indispensable bioalarms that alert patients to modify their activities in order to prevent further damage.’

The authors of the panel consist of twelve countries. 29

References

1 See the case of  St.George’s Healthcare NHS Trust v S (1998) 3 All ER  673 (Court of Appeal), p.758 of Hepple, Howarth and Matthews Tort, Cases and Materials, 5th Edition  by DR Howarth and JA O’Sullivan, ISBN 0 406 063265 (Butterworths, 2000)

2 Quote from Kathleen Jackson-Heppell, Communications Co-ordinator (Enquiry Handling and Internal Communications for NICE), in an email to the Grace Charity for M.E. dated 15/02/2011

3  Quote from Natalie Whelan, Communications Executive (Enquiry Handling) for NICE, in a letter to the Grace Charity for M.E. dated 23rd September 2009.

4  NICE guidance document on CFS/ME, Clinical Guideline 53, 22 August 2007, page 8. http://guidance.nice.org.uk/CG53  

5  See above publication in endnote 1, regarding section attributed to Lord Brandon of Oakbrook, pp.744, 745 

6  The Human Rights Act 1998, European Convention for the Protection of Human Rights and Fundamental Freedoms, Section 1, Article 10, no.1

7  U.K. law on state benefits, Regulation 18 Social Security (Incapacity For Work) Regulations. A similar law applies to other state benefits for sickness and disability.

8  World Health Organisation - International Classification of Diseases 10-G93.3

What is ME? What is CFS? Information For Clinicians and Lawyers, Dec. 2001, Marshall, Williams, Hooper, page 11. Available from Prof. Malcolm Hooper, Dept.of Life Sciences, University of Sunderland SR2 7EE. Also, see www.meactionuk.org.uk  

10  See the paper ‘Illustrations of Clinical Observations and International Research Findings from 1955 – 2005 that demonstrate the organic aetiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’  by Hooper, Marshall, Williams, 2005, page 6. See also www.meactionuk.org.uk   

11  See report from BBC NEWS HEALTH, October 8 2010, ME patients face UK ban on donating blood by Michelle Roberts. www.bbc.co.uk/news/health  

12   Leaflet A Physician’s Guide to Myalgic Encephalomyelitis Chronic Fatigue Syndrome, The Nightingale Research Foundation, Vol.1, Issue 7, revised, 1992, page 17. Also,  Journal of Chronic Fatigue Syndrome Vol . II, No.1, 2003, Canadian Criteria, page 25, The Haworth Press Inc.

13  Ibid., A Physician’s Guide to Myalgic Encephalomyelitis Chronic Fatigue Syndrome, page 25

14  Clinical Observations of Central Nervous System Dysfunction in Post-Infectious, Acute Onset M.E/CFS, page 38, The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome 1992, Byron Marshall Hyde, M.D., The Nightingale Research Foundation.

15  Report from the National Task Force on Chronic Fatigue Syndrome, Westcare, Bristol 1994. This states nine definitions: the recent Canadian definition in 2003 makes ten.

16  Katon & Russo, 1992; Freiberg, 1999, Unhelpful Counsel? MERGE’s response to the CMO report on CFS/ME, 2002, p15.

17  See the website of the Medical Research Council at  www.mrc.ac.uk

18  ME and/or CFS paper, September 2001, page 1, V.A. Spence PhD, Chairman of MERGE (ME Research Group for Education and Support). MERGE has become MERUK since this publication (ME Research UK.) This paper quotes from several published findings. Available from MERUK, The Gateway, North Methven Street, Perth PH1 5PP. Also, see www.meresearch.org.uk  

19  The Biology of the Chronic Fatigue Syndrome, Prof. Anthony Komaroff, The American Journal of Medicine 2000: 108: 99-105.

20  Mitochrondrial abnormalities in the postviral fatigue syndrome, Behan, W.M.H. et al., Acta Neuropathologica 83, 1991, pages 61-65.

21  The Negative Effects of Exercise on an M.E./CFS Dysfunctional Brain, page vii, The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome 1992, Byron Marshall Hyde, M.D., The Nightingale Research Foundation.

22  Journal of Chronic Fatigue Syndrome Vol. 11, No.1, 2003, Canadian Criteria, page 22, The Haworth Press Inc.

23  Oxidative stress levels are raised in Chronic Fatigue Syndrome and are associated with clinical symptoms, Kennedy, Spence, Belch, Free Radical Biology & Medicine 2005:39:584-589

24  Directly from the Horses’ Mouths, Doris M. Jones MSc, Reference Group Member, CMO’s Working Group. This survey was part of the Working Group on ME/CFS set up by the Chief Medical Officer Sir Kenneth Calman in 1998.

25  Analysis Report by 25% ME Group March 2004 www.25megroup.org

26  See Footnote 22, page 2 of the editorial

27  Letter from IiME (Invest in M.E.) to Mr. Des Turner, Chairperson of the APPG (All Party Parliamentary Group) on M.E./CFS, November 2008. Also, see www.investinme.org    

28  See Professor Malcolm Hooper’s response, 17th February 2011,  Professor Hooper’s  Initial Response to the MRC PACE Trial Press Release hosted by The Lancet www.meactionuk.org.uk  

29  Myalgic Encephalomyelitis Adult and Paediatric: International Consensus Primer for Medical Practitioners. Publishers: Carruthers and van de Sande, 2012. ISBN: 978-0-9739335-3-6 pages 2,7

Tuesday, 12 November 2013

The trial of your faith


C H Spurgeon’s Morning Devotional for 12th November

“The trial of your faith.”

1 Peter 1:7

Faith untried may be true faith, but it is sure to be little faith, and it is likely to remain dwarfish so long as it is without trials. Faith never prospers so well as when all things are against her: tempests are her trainers, and lightnings are her illuminators. When a calm reigns on the sea, spread the sails as you will, the ship moves not to its harbour; for on a slumbering ocean the keel sleeps too. Let the winds rush howling forth, and let the waters lift up themselves, then, though the vessel may rock, and her deck may be washed with waves, and her mast may creak under the pressure of the full and swelling sail, it is then that she makes headway towards her desired haven. No flowers wear so lovely a blue as those which grow at the foot of the frozen glacier; no stars gleam so brightly as those which glisten in the polar sky; no water tastes so sweet as that which springs amid the desert sand; and no faith is so precious as that which lives and triumphs in adversity. Tried faith brings experience. You could not have believed your own weakness had you not been compelled to pass through the rivers; and you would never have known God's strength had you not been supported amid the water-floods. Faith increases in solidity, assurance, and intensity, the more it is exercised with tribulation. Faith is precious, and its trial is precious too.

Let not this, however, discourage those who are young in faith. You will have trials enough without seeking them: the full portion will be measured out to you in due season. Meanwhile, if you cannot yet claim the result of long experience, thank God for what grace you have; praise Him for that degree of holy confidence whereunto you have attained: walk according to that rule, and you shall yet have more and more of the blessing of God, till your faith shall remove mountains and conquer impossibilities.

Thursday, 7 November 2013

Israel And Beyond ...

Tim and Lois, my brother and sister-in-law, have been on their travels again, visiting Israel, Greece, and various other places.  They took a large number of photos and I have inserted a few of them below (clicking on any of the pictures will enlarge them) - 


Old Jaffa (Joppa) from Tel Aviv beach


Reckoned to have been Simon the Tanner's house, Old Jaffa

What you are given at 'The Old Man And The Sea' on Jaffa harbour side,
before ordering anything!

View from Lutheran guest house in Christian quarter of old Jerusalem, looking across part of Jewish quarter to Temple Mount and Mount of Olives beyond

Just to the left of last picture

Model of Jerusalem as during 2nd temple period

Looking over part of modern Jerusalem to section of
old wall south of Jaffa gate

Part of men's section of the Kotel (Western wall).
Part of outer retaining temple wall

Very ornate Torah case in Mamilla mall shopping centre, Jerusalem

Looking towards Athens when leaving Pyraeus port

At sea leaving Greek island and on the way to Montenegro

Early morning mist over sea, heading to Kotor port, Montenegro

Mountains of Montenegro from near Kotor

Harbour by old city, Dubrovnik


Wednesday, 23 October 2013

Is a high-fat diet GOOD for the heart? Doctors say carbs are more damaging to the arteries than butter or cream


  • Experts claim false interpretation of scientific studies has led to millions being 'over-medicated'
  • Doctors claim it is time to 'bust the myth' of the role of saturated fat in heart disease
  • Some nations are adopting dietary guidelines to encourage high-fat foods
Cutting back on butter, cream and fatty meats may have done more harm to heart health than good.

Experts say the belief that high-fat diets are bad for arteries is based on faulty interpretation of scientific studies and has led to millions being ‘over-medicated’ with statin drugs. 

Doctors insist it is time to bust the myth of the role of saturated fat in heart disease.

Some western nations, such as Sweden, are now adopting dietary guidelines that encourage foods high in fat but low in carbs.

Cardiologist Aseem Malhotra says almost four decades of advice to cut back on saturated fats found in cream, butter and less lean meat has ‘paradoxically increased our cardiovascular risks’.

He leads a debate online in the British Medical Journal website bmj.com that challenges the demonisation of saturated fat.

A landmark study in the 1970s concluded there was a link between heart disease and blood cholesterol, which correlated with the calories provided by saturated fat.

‘But correlation is not causation,’ said Dr Malhotra, interventional cardiology specialist registrar at Croydon University Hospital, London.

Nevertheless, people were advised to reduce fat intake to 30 per cent of total energy and a fall in saturated fat intake to 10 per cent.

Recent studies fail to show a link between saturated fat intake and risk of cardiovascular disease, with saturated fat actually found to be protective, he said.

One of the earliest obesity experiments, published in the Lancet in 1956, comparing groups on diets of 90 per cent fat versus 90 per cent protein versus 90 per cent carbohydrate revealed the greatest weight loss was among those eating the most fat.

Professor David Haslam, of the National Obesity Forum, said: ‘The assumption has been made that increased fat in the bloodstream is caused by increased saturated fat in the diet … modern scientific evidence is proving that refined carbohydrates and sugar in particular are actually the culprits.’

Another US study showed a ‘low fat’ diet was worse for health than one which was low in carbohydrates, such as potatoes, pasta, bread.

Dr Malhotra said obesity has ‘rocketed’ in the US despite a big drop in calories consumed from fat. ‘One reason’ he said ‘when you take the fat out, the food tastes worse.’

The food industry compensated by replacing saturated fat with added sugar but evidence is mounting that sugar is a ‘possible independent risk factor’ for metabolic syndrome which can lead to diabetes.

Dr Malhotra said the government’s obsession with cholesterol ‘has led to the over-medication of millions of people with statins’.

But why has there been no demonstrable effect on heart disease trends when eight million Britons are being prescribed cholesterol-lowering drugs, he asked.

Adopting a Mediterranean diet after a heart attack is almost three times as powerful in reducing death rates as taking a statin, which have been linked to unacceptable side effects in real-world use, he added.

Dr Malhrotra said ‘The greatest improvements in morbidity and mortality have been due not to personal responsibility but rather to public health.

‘It is time to bust the myth of the role of saturated in heart disease and wind back the harms of dietary advice that has contributed to obesity.’

Dr Malcolm Kendrick, a GP and author of The Great Cholesterol Con, said Sweden had become the first western nation to develop national dietary guidelines that rejected the low-fat myth, in favour of low-carb high-fat nutrition advice.

He said ‘Around the world, the tide is turning, and science is overturning anti-fat dogma.

'Recently, the Swedish Council on Health Technology assessment has admitted that a high fat diet improves blood sugar levels, reduces triglycerides improves ‘good’ cholesterol - all signs of insulin resistance, the underlying cause of diabetes - and has nothing but beneficial effects, including assisting in weight loss.

‘Aseem Malhotra is to be congratulated for stating the truth that has been suppressed for the last forty years’ he added.

Professor Robert Lustig, Paediatric Endocrinologist, University of San Francisco said ‘Food should confer wellness, not illness. And real food does just that, including saturated fat.

'But when saturated fat got mixed up with the high sugar added to processed food in the second half of the 20th century, it got a bad name. Which is worse, the saturated fat or the added sugar?

‘The American Heart Association has weighed in - the sugar many times over. Instead of lowering serum cholesterol with statins, which is dubious at best, how about serving up some real food?’

Timothy Noakes, Professor of Exercise and Sports Science, University of Cape Town, South Africa said ‘Focusing on an elevated blood cholesterol concentration as the exclusive cause of coronary heart disease is unquestionably the worst medical error of our time.

‘After reviewing all the scientific evidence I draw just one conclusion - Never prescribe a statin drug for a loved one.’

Wednesday, 9 October 2013

Guest Editorial > A Radical Care Pathway for ME/CFS


The following is on the NHS Managers website - 

A Radical Care Pathway for ME/CFS | Nancy Blake

Much maligned and misunderstood, ME gets a radical makeover in this exclusive editorial for nhsManagers.network. But is this pathway really so radical? Perhaps only if you are a healthcare professional!

Analysis

Based on the premise that if an illness is defined by the fact that exercise makes it worse, maybe that should be a starting point for dealing with it!

Immediate diagnosis by careful initial interview:  If patient reports an extraordinary level of debility following a viral illness, which has persisted – has other symptoms which seem random and variable but can be understood as problems of muscle metabolism, cognitive function (short-term memory problems, difficulty in following lines of reasoning), endocrine function (disturbances of appetite, sleep rhythms, temperature regulation) and immune system activity (sore lymph glands, persistent low fever, sore throats),  this whole constellation points to ME/CFS.

This should be regarded as a medical emergency, because the patient’s behaviour in the early stages determines either a path towards recovery or a path towards extreme and long lasting states of incapacity. (1)

The basic prescription should be to go home and go to bed; just doing the minimum exercise necessary to prevent DVT (getting up to go to the loo might be enough!).  Families need an explanation that for the patient, minimising muscular exertion is essential.  A home visit from a Physiotherapy/OT team can provide advice about how to do everyday tasks using a minimum of muscular exertion, like the advice given to MS sufferers for the management of their exhaustion.  The OT should assess the home and recommend/ provide aids as appropriate for any physical illness which causes extreme weakness. The patient will need psychological support to accept that the (unwelcome!) adoption of a ‘disabled’ lifestyle is the way to ‘fight’ this illness and facilitate a gradual return to as normal a life as possible.   After that, a regular visit from a key worker backed up by online support may be all the patient needs while he is conserving energy towards getting better.

What should absolutely not happen is a referral to hospital, unless to provide a period of complete bed rest.  Tests to eliminate other potential diagnoses should be done at home as far as possible.  The expensive centres which have been set up, requiring patients to attend in order to engage in extra exertion (just getting to a hospital appointment is enough to wipe out an ME/CFS patient for days) should be replaced by these less expensive domiciliary services.   Apart from encouragement to keep on resting, and encouragement to family members to appreciate that this is needed, the patient should be left alone, allowed plenty of time to get better.  Under this regime, gradual improvement is to be expected  (school-age children should be provided with home education until a gradual return to school becomes a possibility).

When the patient is ready, there should be interventions at the patient’s educational institution/place of work aimed at eliminating all avoidable exertion. Along with facilities for rest breaks and perhaps being able to do some work from home, this gives the patient the best chance of returning to their education, job, or professional activities.  Which, contrary to the ‘false illness beliefs’ of some psychiatrists, is what patients are desperate to do.  It needs to be respected that this illness is not one of motivation: ‘I can’t’ does not mean ‘I don’t want to’, it means that there is a physical limit to what the patient can do without serious subsequent repercussions.

Doctors brave enough to use this ‘light touch’ approach would be rewarded by positive relations with their patients, and the prospect of seeing them getting better instead of getting worse.  But it would take real courage to challenge the cultural myths that ‘fighting’ illness is the only way to go, that exercise is good for absolutely everything, and that people who have ME/CFS don’t want to get better, and must be persuaded or coerced into activity.  Counter-intuitively, treating ME/CFS patients like invalids initially is the process most likely to maximise ‘return to function’.

The current psychiatric model has no way of acknowledging treatment failure – failure can always be blamed on the patient.  No wonder there is so much hostility.  It is time to step across the divide, accept that patients are telling the truth, and start giving them a chance to get better.

Nancy Blake is author of ‘A Beginner’s Guide to CFS/ME’, and co-author, with Les Simpson, Ph.D. of ‘Ramsay’s Disease – ME’.  She is currently undertaking a Ph.D. project at Lancaster University on the conflicting paradigms of ME/CFS

Email: alternatives@alternatives.karoo.co.uk>

1. www.name-us. Melvin Ramsay. name-us.org. [Online] [Cited: 3 October 2013.] “The degree of physical incapacity varies greatly, but the dominant clinical feature of profound fatigue is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis.”

“…in those patients whose dynamic or conscientious temperament urge them to continue effort despite profound malaise or in those who, on the false assumption of ‘neurosis’, have been exhorted to ‘snap out of it’ and ‘ take plenty of exercise’ the condition finally results in a state of constant exhaustion.”