Thursday, 18 June 2015

Through Gates of Splendour - Elisabeth Elliot (1926-2015)

I am sure that many have benefited from life and writings of Elisabeth Elliot.  I heard some time ago that she was suffering from dementia - so it is a joy to hear that she has now gone "Through Gates of Splendour" and is with the Lord.

Evangelical Times


Elisabeth Elliot went to be with the Lord on Monday 15 June after suffering for 10 years with dementia.

She was born in Belgium to missionary parents. The family moved to the U.S. when she was just a few months old.

She met the man who was to be her husband at Wheaton College while they both studied Classical Greek. Already they both had in mind that they wanted to use their studies to help them translate the New Testament into new languages.

They went separately to Ecuador to work with the Quichua Indians and married there in 1953.

While working with the Quichua Indians Jim was preparing to reach the Huaoroni tribe. Known as the ‘Auca’ meaning savage, they had a fearsome reputation for violence and hostility to outsiders.

Elisabeth’s husband Jim was killed along with the other members of the team when they set up a missionary base near the Huaoroni tribes.

Elisabeth remained in Ecuador helping with the work of the mission and eventually met two Huaoronic women. One of these, a lady known as Dayuma, taught her the Huaoroni language. When Dayuma returned to her people this seemed to open a door of opportunity for Elisabeth and her associate Rachel Saint (sister of Nate Saint, one of Jim Elliot’s companions who was also killed) to move as missionaries to the Huaoroni tribe.

In October 1958 Elisabeth went with her three-year-old daughter and Rachel Saint to live with the Huaoroni tribe.

Elisabeth Elliot has written of her husband’s missionary work in Shadow of the Almighty and Through Gates of Splendour.

Elisabeth Elliot died on 15 June 2015, at the age of 88. Steve Saint, the son of Nate who was killed alongside Elliot's first husband Jim, has posted on Facebook about 'the loss of her mind to dementia' and 'her ten-year battle with the disease which robbed her of her greatest gift'.


Elisabeth Elliot: Suffering Is Never for Nothing – Posted by Ligonier Ministries


Elisabeth Elliot (1926-2015) was a Christian author and speaker. She, having lived through great loss, taught on God's grace in the midst of hardship, as well as teaching wives and mothers to fulfill the high calling of Titus 2.




Wednesday, 17 June 2015

Countess of Mar's Letter to Dr Suzanne O'Sullivan


Dr Suzanne O’Sullivan
National Hospital for Neurology and Neurosurgery
33 Queen Square
LONDON
WC1N 3BG

9 June 2015

Dear Dr O’Sullivan

I write to you as an Independent crossbench member of the House of Lords where I have been since 1975. I am a Deputy Speaker in the House. For more than 20 years I have represented the interests of people with ME/CFS and other MUPS. I am patron of several ME charities and Chairman of Forward-ME.

I have read David Aaronovitch’s review of your book: “It’s all in Your Head – True Stories of Imaginary Illness” and I have listened to what you had to say on Radio 4’s Start the Week programme yesterday, though I have not read your book. Aaronovitch quotes you in the introduction to the chapter on ME as admitting that “to include ME/CFS in a book primarily concerned with the description of those suffering from psychosomatic illness is foolhardy to say the least.” He goes on to say that “This is because the reaction of many ME sufferers, their relatives and friends and the organisations that represent them, to the idea that the condition is psychosomatic – caused by the mind and not by a disease – is intensely hostile. I have experienced this hostility.” I assume the last sentence refers to him personally.

Sadly, both you and he are right about the hostility to the views you both promote, but you give the wrong reasons for that hostility. In recent years there have been a host of papers that demonstrate that ME/CFS is a disease as well as an illness. Firstly the Canadian Consensus document on ME/CFS, published in 2003, gave good guidelines for diagnosis and treatment of people with ME. This was followed by the more comprehensive Myalgic Encephalomyelitis - International Consensus Document published in 2011. More recently, the highly respected US Institute of Medicine in its report “Beyond Myalgic Encephalomyelitis/ Chronic fatigue Syndrome: Redefining the Illness” released on 10 February 2015, made clear that the primary message of the Committee’s report is that “ME/CFS is a serious, chronic, complex systemic disease that often can profoundly affect the lives of patients.”  Patients with the disease have always known this and are, understandably, deeply hurt and offended by the denigration they receive from some medical practitioners.

I admire the fact that you believe that people who suffer psychosomatic illnesses should be treated with compassion and understanding but I am equally disappointed that you appear to have failed dismally to keep abreast of current research into ME/CFS. Had people like you in senior positions really tried to discover what is at the root of the symptoms suffered by the patients that you see more progress might have been made in the diagnosis and treatment of this dreadfully neglected disease.

For example, on 30 May this year in Metabolomics Armstrong et al wrote: “Metabolic profiling reveals anomalous energy metabolism and oxidative stress pathways in chronic fatigue patients.” Have you ever thought of metabolic profiling for your profoundly fatigued patients, I wonder? I do realise that there are vast numbers of papers of variable quality published each year, but I really do think that if one is professing an expertise in a particular disease or illness one should try to keep abreast of current research, don’t you?

You appear to be unaware that research shows that ME is an organic multi-system neuro-immune disorder with protean symptomology; some consider it likely to be an autoimmune disease with the target organ being the vascular endothelium.

For the avoidance of doubt, here are some facts that may have escaped you:

•             Since 2005 ME has been included in the UK National Framework for long-term neurological conditions.
•             On 30 January 2006 the then health Minister, Lord Warner, said on record: “There is only one World Health Organisation International Classification of Disease code for chronic fatigue syndrome/Myalgic encephalomyelitis, which is G93.3.” (HL3612)
•             On 2 June 2008 the Parliamentary Under-Secretary of State, Department of Health (Lord Darzi of Denham) stated: “My Lords, the Government accept the World Health Organisation’s classification of CFS/ME as a neurological condition ….My Lords, I have acknowledged that CFS/ME is a neurological condition.” (HLPQ: Health: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis)
•             On 21 November 2011 Lord Freud, Minister for Welfare Reform, confirmed in a letter to me that the Department for Work and Pensions does not consider ME/CFS to be a mental disorder. The letter was unequivocal: “the Department of Health has indicated that they have ‘always relied on the definition set out by the World Health Organisation in its International Classification of Diseases (ICD) under the ICD code G93.3, subheading other disorders of the brain’. The DWP is in agreement with this view. Therefore, for the avoidance of doubt, I can be clear that the Department does not classify CFS/ME as a mental health disorder.
•             The US National Institutes of Health, one of the world’s foremost medical research centres, convened a Pathways of Prevention working group which, in December 2014, published its draft Statement entitled “Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”. It is an important document as it signifies a major change in attitude towards ME/CFS. For example:
“Strong evidence indicates immunologic and inflammatory pathologies, neurotransmitter signalling disruption, microbiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS.
“This is not a psychological disease in aetiology.
“fMRI and imaging technologies should be further studied as diagnostic tools and as methods to better understand the neurologic dysfunction of ME/CFS.

As a neurologist, I am sure you will find these views of interest.

Further research from the US posits that true ME (as distinct from the ubiquitous chronic “fatigue”) is indeed an autoimmune disorder: “Our results indicate a markedly disturbed immune signature in the cerebrospinal fluid of cases consistent with immune activation in the central nervous system, and a shift towards an allergic or T-helper type-2 pattern associated with autoimmunity ….Profiles of ME/CFS subjects also differed from those of MS subjects, with ME/CFS cases showing a markedly greater degree of central nervous system immune activation as compared with those with MS” (M Hornig et al: Molecular Psychiatry 31 March 2015: doi:10.1038/mp.2015.29)

The evidence is now so strong that ME/CFS is a serious multisystem neuro-immune disease that it becomes intellectually embarrassing for anyone to continue to consider it to be a psychosomatic disorder. 

I do hope that you will take my submission seriously and reconsider your belief that ME/CFS is a psychosomatic disorder.

I look forward to receiving your considered response.

Yours sincerely

Countess of Mar

Copy: David Aaronovitch.
          Chatto and Windus – Lisa Gooding, Publicity.

Friday, 12 June 2015

Book Review by Nasim Marie Jafry: It's All in Your Head: True Stories of Imaginary Illness


I imagine the publisher was excited by Dr O'Sullivan's 'ideas' - I saw the words 'groundbreaking' and 'controversial' in one of the blurbs. Imaginary illness carries notions of madness across the centuries, as readers we are intrigued - and seduced. However, having read the chapter 'Rachel', which deals with a young woman with 'ME/CFS' - I can say that the book is certainly not groundbreaking, but rather, in the case of ME, an irresponsible recycling of a dying - very dangerous - narrative, which has been perpetuated by psychiatrists since the nineties. And I'm afraid I find her style to be unengaging and toneless, though I wonder also if that is a kind of clinical constraint.

So her ideas must be sparkling and new if I am to be pulled in.

While vigorously suggesting that patients with myalgic encephalomyelitis (ME) have false illness beliefs, she then bases the entire chapter on her *own* beliefs. There is no evidence whatsoever to prove that ME is psychosomatic. There is however growing robust evidence that ME is a complex neuroimmune illness, and the key to unlocking the puzzle is ever nearer - biomedical researchers worldwide are excited and hopeful about finding a unique biomarker. Dr O'Sullivan acknowledges that there is evidence of immune abnormalities but then chooses to ignore them completely and goes off on her wild somatisation spree. She seems not to *want* the science to progress, so zealous is she in her beliefs.

The whole chapter on 'Rachel' is manipulative and incoherent, illuminating only in what it omits. I know what the gaps are, so I can see the huge holes. She wrongly says that graded exercise (GET) is the most effective treatment, even although this treatment has been thoroughly discredited, it makes patients worse. This psychologising of ME is extremely harmful to patients, as patients and true specialists have been pointing out for years.

I have had virally-triggered ME since 1983 - I was nineteen years old, an undergraduate, unlucky to get a nasty enterovirus - and was diagnosed by a consultant neurologist, after EMG and muscle biopsy and many blood tests, which confirmed abnormalities. I had been ill for eighteen months at the time of diagnosis, steadily getting worse, and, of course, had never heard of ME then, few people had (I didn't go upstairs to my room and google). My initial treatments included a plasma exchange with immunosupression, and anti-viral drugs. And yet Dr O'Sullivan denies hotly in her book that immunotherapy is used for ME, anywhere. She also seems unaware of the anti-cancer drug trial going on in Norway just now. The scientists have recently been in London discussing their trial at an annual ME conference, which attracts scientists from all over world.

She also fails to mention the huge confusion caused by the different criteria for ME - the CFS (chronic fatigue syndrome) label was introduced in late eighties in UK and the criteria for ME were widened and diluted, with the result that anyone with unexplained 'chronic fatigue' was being diagnosed with ME. This conflation of classic ME and CFS has caused a major headache for patients (no pun intended). Patients who do have psychiatric-based fatiguing illness are sometimes being misdiagnosed with ME. The conflation has, naturally, caused immense problems with diagnosis/research; moreover, severely ill/bedridden patients with actual ME are not being included in trials.

O'Sullivan also makes no reference to post-exertional malaise (PEM), which is unique to ME, exhaustion (physical and mental) after trivial exertion, she talks only generally of 'fatigue'. She ignores the disabling cognitive dysfunction. Neither does she mention orthostatic intolerance, the inability to be upright, stand for long, another cardinal feature. She basically excludes all the symptoms of ME in her discussion, bar 'fatigue'. She seems to think managing ME is managing fatigue, and Rachel 'fails'.

I honestly wonder if Dr O'Sullivan truly believes what she has written or if she needed to pad out her book as she didn't have enough real psychosomatic illnesses for the pot. And she knows writing about ME as a psychiatric illness will be immediately controversial - even when she is wrong. Whatever her motive, she has failed spectacularly to keep up with the research and she has insulted not only ME patients but the whole scientific community engaged in ME research.

***Update: I just want to add that this may be one of the most revealing passages in the ME/CFS chapter:

'In my early years training in neurology I encountered many patients with CFS, but more recently neurologists have distanced themselves from this disorder and patients are more likely to seek help from immunologists or endocrinologists. I do not currently see patients for the purpose of diagnosing or treating ME/CFS, but many of my patients with dissociative seizures have a history of ME/CFS, and there is something very interesting in that fact alone.'

There is something very interesting in the fact that Suzanne does not seem to have actually met (m)any patients with classic Ramsay-ME (in 1990s when she was training the Wessely/CFS school was just taking root). Rachel, the case study with ME/CFS is, to my mind, an artificial construct, a composite character with the 'behaviours' of ME patients - internet diagnosis, increasingly helpless, 'over-helpful' parents - that the Wessely school adores. Rachel rejects the psychiatric treatment offered her. We never find out what happens to her, though Suzanne says: 'The impact of our emotional well-being on our health is not a trifling problem. I only wish I could convince Rachel of this'.

Her apparent lack of contact with patients who actually have ME - coupled with not following the science - would perhaps explain why she felt that including ME in a book of imaginary illnesses was acceptable.


Thursday, 4 June 2015

The Glories Of Creation

Another poem from “Echoes of Eternity” by Michael R Abbott; used with permission.

The Glories Of Creation

Through the woodland hear the echo
Of the birds that sing all day
And at dusk, amongst the shadows,
See the fox and cubs at play;
Badgers from their setts appearing
As the darkness veils the glade:
See the glories of Creation
In the creatures God has made.

In the garden in the morning,
As the buds burst into flower,
Bees collect the precious nectar,
Toiling on from hour to hour.
Spiders spin their webs of silver,
Architects and builders too;
Butterflies clothed in their beauty,
Decked by God with every hue.

Wolves and bears, and lions and tigers
Live in lands beyond the seas,
But the God who made the rabbit
And the little mouse made these.
Elephants that pull their burdens,
Camels crossing desert sand;
All of these, for His good pleasure,
In His wisdom God has planned.

Fishes in the seas and waters,
Creatures from the ocean deep,
Shark and dolphin, seal and turtle,
Each their place in nature keep.
Mighty whales with spouting fountains,
Swimming out so far from land:
All are part of His Creation,
All were fashioned by His hand.

Witnesses of the Creator,
Formed by His divine decree;
By His word brought into being,
Simply He said, "Let there be".
Thus beholding God's Creation,
Let us give Him all the praise;
Worship Him in awe and Wonder,
Now and through eternal days.

Monday, 1 June 2015

Takeaways From The ME Association’s CBT, GET, and PACING Report


ME/CFS ILLNESS MANAGEMENT SURVEY RESULTS

“NO DECISIONS ABOUT ME WITHOUT ME”

The ME Association just released the results of a patient survey taken in 2012 that covered management and self-management courses commonly offered to patients with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, or Post-viral Fatigue Syndrome. The report (available in full on the ME Association website) is comprehensive and only part 1 of 2. Part one, outlined below, deals with the qualitative and quantitative analysis of the study data. Part 2 (already underway) will cover illness management techniques from the patient perspective and proposed amendments to the NICE guidelines. Direct quotes from the report are bolded below.

REPORT SUMMARY

“With regard to the effect courses had on illness severity, we found that GET resulted in the most significant change with more patients who attended such courses reporting their illness had become more severe as a result.”

Graded Exercise Therapy or GET made most patients with ME/CFS get worse. According to the study results, about 75% of people who participated in a GET program felt that their illness got more severe as a result.

Where patients attended a CBT, GET or Pacing course which had no overlapping elements of the other two interventions, more reported an improvement in symptoms following their Pacing course than did those who attended either of the other courses. CBT resulted in 91% of participants feeling their ME/CFS symptoms were unaffected or made worse, GET 88%, and Pacing 55%.


Looking at the numbers, cognitive behavioral therapy (CBT) and graded exercise therapy seem to have a similar result. But when you look at the graphic there’s a very important distinction. While 74% of patients on graded exercise therapy got worse, 73% of people on cognitive behavioral therapy had no change to their condition. For most patients, ME/CFS symptoms were not improved by cognitive behavioral therapy but only 18% reported a worsening of their condition.

It was clear that the majority of patients attending Pacing courses with no overlapping elements found this management approach more appropriate to their needs than did those who attended either CBT only or GET only courses. Only a small minority of GET and CBT courses were appropriate to needs.

Only 8% of those who participated in cognitive behavioral therapy and 12% of those in graded exercise found it improved their ME/CFS. By comparison, 45% (or nearly half) of patients with ME/CFS improved by participating in a pacing course!

Symptoms were reported as having improved or as remaining unaffected by more patients where therapists leading a course recognised ME/CFS to be a physical illness than where therapists believed the illness was psychological. Symptoms were deemed to have been made notably worse where courses were led by therapists holding this psychological belief even for Pacing.

This may be one of the most important distinctions in the report. With a 45% success rate, pacing cannot be considered a surefire treatment for ME/CFS. Instead, the course was dependent on the therapists leading the course. Without an understanding of the physical (not psychological) nature of the illness, the treatment was not as effective. Therapists offering pacing courses should recognize ME/CFS as a physical illness in order to maximize a patient’s chance of improvement.

Patients who were not offered or who were refused courses reported the main reason as being that no courses were available in their area. The second reason was judged to be that many patients were considered unlikely to benefit from the offered courses, and also of note was a lack of access to courses and no available home-visit option.

If patients don’t have access, they’re not going to be able to attend. That’s the main takeaway from this section. Disregarding those patients who had access but chose not to attend an offered course, most patients who didn’t participate did so because they couldn’t. Courses may not be available to those who live far from a major treatment center and especially to the severely ill who lack the ability to leave the house and attend a course.

For those who were on benefits, it was most notable that irrespective of the course undertaken, claims remained largely the same with few reducing or stopping their benefits. However, net overall increases were seen in benefits following courses in CBT and GET compared to a slight decrease from those attending Pacing courses.

Disability benefits were mostly unaffected by participation in any of the courses. But it’s not surprising that there was a slight increase in disability benefits for some patients after participating in cognitive behavioral therapy and graded exercise therapy since many patients became more severely ill. There was also a slight decrease in disability benefits for some after participating in a pacing course, likely due to an overall improvement. But all these changes were small and did not occur for the majority of patients.

REPORT CONCLUSIONS

We conclude that CBT in its current delivered form should not be recommended as a primary intervention for people with ME/CFS.

Cognitive behavioral therapy had no noticeable impact for the majority of ME/CFS patients so the report concludes that it should not be considered a primary treatment option.

We conclude that GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.

Graded exercise therapy made the majority of ME/CFS patients get worse so the report concludes that it should be withdrawn completely as a primary treatment.

Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management for people with ME/CFS and should therefore be a key component of any illness management programme.

Pacing won. Out of the three, it showed the most positive results and the fewest negative results for ME/CFS patients. But it’s important to remember that the positive results were more strong when therapists acknowledged ME/CFS as a physical and not a psychological condition.

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The News From the 10th London Invest in ME Conference, May 2015 -