ME/CFS in Colombian workers

Research abstract:

Background:

Chronic Fatigue Syndrome/Myalgic encephalomyelitis (CFS/ME) is a debilitating and complex disease characterised by intense fatigue and a variety of other symptoms, which are present for at least 6 months. Studies of CFS/ME in the working population are few.

Objective:

To determine the prevalence of CFS/ME-associated symptoms and their relation with occupational factors in the personnel of a security company in Bogota during the year 2016.

Materials and methods:

A cross-sectional study of the personnel of a security company utilising a questionnaire to collect data on clinical and occupational history. In the qualitative variables, we obtained frequencies and percentages and in the quantitative variables measured of central tendency and of dispersion. We determined associations between variables. We determined associations between variables using Pearson’s chi-square, Fisher’s exact test, Mann-Whitney test and an unconditional logistic regression model.

Results:

We evaluated 162 security workers. The most common symptoms of CFS/ME were unrefreshing sleep (38.3%), and muscular pain (30.2%). We found a statistically significant association between severe fatigue of at least 6 months duration with alteration in the nervous system (p=0.016) and with drug consumption (p=0.043), and between unrefreshing sleep and sleep duration between 5 and 7 hours (0.002).

Conclusion:

In the workers, the most prevalent CFS/ME symptom was unrefreshing sleep, and this was associated with a sleep duration of 5-7 hours. In this study, we could identify those workers who had probable CFS/ME and which would benefit from a medical evaluation to make a timely diagnosis.

Prevalence of symptoms of chronic fatigue/myalgic encephalomyelitis (CFS/ME) and its relation to occupational factors in workers at a security firm in Bogota, Colombia, 2016, by Ximena Rincon; Jonathan Kerr, Diego Herrera, Milciades Ibanez , Universidad del Rosario, Colombia, 2016, MSc Thesis in Spanish

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Rehmeyer makes statisticians’ ‘jaws drop’ over PACE

MEAction blog post by Alex Anderssen, 8 August 2016: Rehmeyer makes statisticians’ ‘jaws drop’ over PACE

Science writer Julie Rehmeyer presented a critique of the PACE trial to North America’s largest gathering of statisticians in Chicago earlier this week.

Julie Rehmeyer

Her talk was titled, “Bad Statistics, Bad Reporting, Bad Impact on Patients: The Story of the PACE trial”. Rehmeyer explained to the 200-strong audience some of the problems with the trial, including the changes to the originally planned analyses of recovery rates. She showed how, with the new analyses, patients’ physical function could worsen and fall below the level required to enter the trial, and yet they would be considered to be recovered.

Rehmeyer said, “When I went through the slides showing the changes to the physical function criterion for recovery, I saw jaws drop.”

PACE was, she told the audience, “one of the most damaging cases of bad statistical practice that I have personally encountered in my years as a journalist.” It was, she said, an “object lesson in how our systems can break down. In this case there were serious breakdowns statistically, scientifically, journalistically, and in public health.” She added that patients were “being hurt by it to this day”.

The Chicago conference was held jointly with the International Statistical Institute and major national statistical associations such as the American Statistical Association (ASA) and the UK’s Royal Statistical Society. Before the talk, the ASA urged delegates to attend Rehmeyer’s talk and hear “how bad statistics harm patients and our profession”.

Rehmeyer said, “I was delighted by the response of the audience…. Quite a few people came and talked to me afterward, including a couple of folks with genuine influence.”

Rehmeyer is a contributing editor with Discover magazine and has written previously on ME/CFS in the New York Times and Slate.

The slides of her talk can be found here; her speaking notes maybe be viewed by clicking the “Notes” icon just above the comments section. The abstract of her talk is here.

Another report of the talk, by Cort Johnson, 7 Aug 2016: PACE Trial blasted at Statistician’s Conference by award winning journalist

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The harms done by the biopsychosocial model of ME

Letter in response to: Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm?, by John Peters, patient, 31 July 2016

Geraghty & Esmail are right to draw attention to the harm done to the doctor-patient relationship by the biopsychosocial model of ME. The doctor considers the patient an unreliable witness to their own illness and so does not trust the patient; the patient knows the doctor does not trust them and so does not trust the doctor.

There are many other harms:

  1. Patients are pained simply from being seen as an unreliable witness to their own body and illness. Enduring devastating symptoms, mourning the loss of their life, patients are distressed to be told that the illness is a function of their belief; that the knowledge they are ill is a false belief; and, implicitly, that the power to recover lies simply within themselves.
  2. Patients are disempowered. Not only does ‘doctor know best’, but anyone who feels the urge to express an opinion: family, friends, acquaintances, strangers, online commentators. Since the patient can not be considered reliable then everyone knows better.
  3. Patients are harmed by the popular perception of the illness which follows from the biopsychosocial designation. While many who work in the field would never use the term, the illness is understood as ‘all in the mind’.
  4. Patients’ relationships to the wider society are harmed. Governments are encouraged to question the payment of benefits to avoid encouraging patients in their illness beliefs.
  5. The patient-family relationship is damaged: families are told to challenge the patient’s false beliefs. They look differently at their family member when told the patient has the power to recover within them. Families are not receiving the information, help and support they need.
  6. Since patients do not respond to therapy, therapists are harmed. Therapists become frustrated with the patient or with themselves for this failure.
  7. Other patients, with illnesses which may respond to therapy, are unable to get the help they need because therapists are wasted on ME patients.
  8. Research priorities are distorted.
  9. Persisting with a diagnosis with no scientific basis is harmful in itself: damaging to science and public confidence.

It is time the UK followed the USA and dumped the failed, unevidenced, harmful biopsychosocial model.

Read more letters in British Journal of General Practice

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Mild cognitive impairment found to worsen driving skills

New research is showing that even mild cognitive impairments, short of dementia, have the potential to affect driving skills.

CBC news blog post, 28 July 2016: Driving and dementia: A delicate balance

How to assess the driving fitness of people with slight declines in cognitive abilities

Doctors are required in many Canadian provinces to report to the relevant transportation ministry the medical condition of someone they think shouldn’t be driving. But if the cognitive deficits are minor, that may not happen.

Mary Beth Wighton of Southampton, Ont., remembers the day four years ago when her doctor delivered her a devastating one-two combination of bad news.

“She said, ‘I am sorry to tell you but you have probable frontotemporal dementia.’ She explained what it was and then she said, ‘and there is another thing that I need to do immediately, which is to revoke your driver’s licence … effective immediately.'”

Senior drivers need more options: MDs
Report proposes ways to help keep drivers sharper as they age
Check driving ability of seniors with dementia: study

Wighton, who was then 44, was still in the early stages of dementia.

But research is increasingly showing that even mild cognitive impairments (MCI), short of dementia, have the potential to be a problem on the road.

Megan Hird, a researcher at St. Michael’s Hospital in Toronto, carried out tests on 22 patients with MCI and 17 healthy individuals, using driving simulators and brain scans.

“The results of our study showed that patients with mild cognitive impairment … exhibited increased risky driving errors, such as collisions and lane deviations, compared to cognitively healthy drivers,” she told CBC News.

“This was particularly the case during more cognitively demanding aspects of driving, such as left-hand turns at a busy intersection.”

3 times more driving errors
Her study, presented Thursday at the Alzheimer’s Association International Conference in Toronto, suggests that drivers with mild impairment in their cognitive ability — but who haven’t been diagnosed with Alzheimer’s disease or any other kind of dementia — were much more likely to commit major driving mistakes than healthy drivers. In some cases, the error rate was triple.

Older drivers with dementia unwilling to give up keys

While people with MCI are at an increased risk of later developing Alzheimer’s disease or another form of dementia, their current impairments in daily behaviour are more subtle — so people with MCI often continue to carry out all of their routine daily activities, like working, managing their finances, cooking … and driving.

The problem, researchers say, is that driving is an especially complex task, involving attention, memory, executive functioning and the processing of visual information about where objects are.

Currently, doctors are required in many provinces to report the medical condition of someone they think shouldn’t be driving to the relevant transportation ministry. But if the cognitive deficits are minor, that may not happen.

Hird says many doctors don’t feel comfortable assessing the driving fitness of their patients. “It’s a very difficult conversation to have with someone,” she acknowledges.

Senior drivers 
Most provinces require senior drivers, usually those 75 or 80 or over, to undergo some kind of vision and/or written test every two years to assess their driving ability. Depending on the outcome of that initial assessment, a road test may be required.

While driving is not a right, losing one’s licence can be a major life-changer. For instance, someone with a mild cognitive impairment or in the early stages of Alzheimer’s disease may not qualify for door-to-door municipal transit services, because they’re not recognized as disabled.

Screening tools
The Canadian Medical Association publishes a “driver’s guide” for its members that doctors can use to detect and assess health conditions that can affect their patients’ ability to drive, including dementia and mild cognitive impairment.

Hird says the ultimate goal of her research is to help develop tools that doctors can use to screen people who may be at risk, because she says there are currently “no valid tools” to help them assess the driving fitness of patients with mild cognitive impairment.

“Because [driving] is such an important source of independence, you don’t want to be taking away someone’s licence when they are still able to drive safely,” Hird says.

“We need to achieve a balance between maintaining patient independence [and] the safety of the driver and the general public.”

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Reversal of Refractory Ulcerative Colitis & severe CFS symptoms

Case report abstract:

BACKGROUND: Patients with multisymptom chronic conditions, such as refractory ulcerative colitis (RUC) and chronic fatigue syndrome (CFS), present diagnostic and management challenges for clinicians, as well as the opportunity to recognize and treat emerging disease entities. In the current case we report reversal of co-existing RUC and CFS symptoms arising from biotoxin exposures in a genetically susceptible individual.

CASE REPORT: A 25-year-old previously healthy male with new-onset refractory ulcerative colitis (RUC) and chronic fatigue syndrome (CFS) tested negative for autoimmune disease biomarkers. However, urine mycotoxin panel testing was positive for trichothecene group and air filter testing from the patient’s water-damaged rental house identified the toxic mold Stachybotrys chartarum. HLA-DR/DQ testing revealed a multisusceptible haplotype for development of chronic inflammation, and serum chronic inflammatory response syndrome (CIRS) biomarker testing was positive for highly elevated TGF-beta and a clinically undetectable level of vasoactive intestinal peptide (VIP).

Following elimination of biotoxin exposures, VIP replacement therapy, dental extractions, and implementation of a mind body intervention-relaxation response (MBI-RR) program, the patient’s symptoms resolved. He is off medications, back to work, and resuming normal exercise.

CONCLUSIONS: This constellation of RUC and CFS symptoms in an HLA-DR/DQ genetically susceptible individual with biotoxin exposures is consistent with the recently described CIRS disease pathophysiology. Chronic immune disturbance (turbatio immuno) can be identified with clinically available CIRS biomarkers and may represent a treatable underlying disease etiology in a subset of genetically susceptible patients with RUC, CFS, and other immune disorders.

Reversal of Refractory Ulcerative Colitis and Severe Chronic Fatigue Syndrome Symptoms Arising from Immune Disturbance in an HLA-DR/DQ Genetically Susceptible Individual with Multiple Biotoxin Exposures, by Shelly R. Gunn, G. Gibson Gunn, Francis W. Mueller in Am J Case Rep 2016; 17:320-325

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2016 – In remembrance

Yet still I must demand and demand again.
Their death demands we ask for integrity and truth.
But there is so little of it out there
All lost in compromise or outright denial and ignorance.
The dead grow,
Shockingly.

Loved ones depart out of the blue, without prior expectation.
The shock leaves tremors in the community of the sick
still left behind,
Not knowing who will be next.
Fearing the worst
Yet hoping for the best.
There is so little truth.
There is such little accurate representation.
There is such little helpful information.
And even less reliable help.

No one knows any more if the diagnosis is even reliable.
If what I have is what you have
Or what they, who died, had either.
It is all such a deliberately orchestrated human tragedy.
And whilst we weep,
The names of the dead and their unjust suffering
Demands we do more
Somehow
To explain
To answer
To justify
To insist
That it stop
Now
Once and for all.

Their precious lives unfairly lost too soon.
Outrageously hidden in a fatigue lie
That did not represent them
Could not help them
Could only harm them.
As the long line builds
The roll call of the dead
Grows
As does the unrest in my soul,
The indescribable suffering of all those living and dead
Could never be condoned
Acceptable or compensated for.
For it is unimaginable
Unreasonable
Unacceptable
And were it to be recognised and fully admitted
By those who should do so,
The tears of remorse would flood the whole universe
And the shame be so overwhelming
That people would turn their heads in shock at what has
been done to us (or not)
In the name of science and medicine and politics.
And people would hang their heads and never dare look
up again
If they had any insight or honesty in their hearts
Of their contribution
To this unending torment,
Only silenced
By death itself.

Whilst the names and the faces
Linger tenderly
In the hearts of those who do know
And remember with love.

by Linda Crowhurst

severe me stonebird 2016
image reproduced courtesy of www.stonebird.co.uk

International memorial list of those with ME who have died http://www.ncf-net.org/memorial.htm

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Severe ME Remembrance Day, 8 Aug 2016

Severe Myalgic Encephalomyelitis Understanding and Remembrance Day August 8th 2016

Trapped by ME faceWhy have an Understanding and Remembrance Day highlighting the plight of the severely affected?

The severity of this illness often makes it impossible for people to have contact with loved ones, doctors, or the outside world.  This is a group of thousands of people in the UK who are generally invisible. People with the severe forms of this disease can no longer pursue their careers, hobbies, or everyday lives.

In helping us to make visible the stories of people living with severe ME, and of those who have died as a result of the illness, you can help end years of misrepresentation about ME and increase the understanding of the general public, who often underestimate the seriousness of the disease. This ignorance causes much suffering to those with M.E., who have a double battle, not only with the disease itself, but also to get the illness taken seriously by those around them. There is an urgent need to raise awareness.

What’s the significance of 8th August?

This is the birth date of Sophia Mirza.  Sophia was bed-bound with severe Myalgic Encephalomyelitis and was a victim of medical abuse.  Her doctors did not believe that Myalgic Encephalomyelitis was a physical disease and so she was forcibly taken from her bed/home by social workers, police officers and doctors, and kept in a psychiatric facility where she received inappropriate treatment and care.  Sophia subsequently died of ME at the age of 32.  Her post-mortem revealed widespread inflammation in the spinal cord.  This same inexcusable abuse still goes on.

Emily Collingridge –  17th April 1981 – 18th March 2012

When our daughter, Emily, died in 2012, my husband and I were overwhelmed by the hundreds of messages of sympathy we received, even from people we did not know.  They came from friends, from those expressing gratitude for her endless campaigning to spread awareness of ME and from readers of her guide to living with severe ME, many of whom said it had changed their lives.”

The inquest into Emily’s death took place on 24th May 2013.  In her summary the Coroner referred to ME as a condition which is not understood, and expressed the need for more research.  She was echoing an appeal made by Emily in 2011 highlighting what she described as “the scandalous lack of research into the most severe form of ME and the lack of appropriate support for those suffering from it.”

A final plea in Emily’s own words.

“Please put an end to the abandonment of people with severe ME and give us all real reason to hope”.  Emily may have lost her personal battle, but her battle on behalf of all those still suffering from severe ME should not be ignored.”

from: 25 percent ME group press release

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Effects of telephone-delivered cognitive behavioral stress management intervention in CFS

Research abstract:

The perceived impact of chronic fatigue on daily living (i.e., fatigue interference) is particularly relevant for patients diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), a medically unexplained illness associated with neuroendocrine and immune abnormalities.

Literature suggests that fatigue interference is higher among women with CFS/ME than with other women facing chronic fatigue concerns, such as cancer survivors. To date, these comparisons have been primarily qualitative, limiting the ability to statistically control for related factors such as fatigue severity. Furthermore, greater fatigue interference in CFS/ME may relate to a suppressed cortisol awakening response (CAR) and heightened levels of the pro-inflammatory cytokine interleukin-6 (IL-6), though these associations have not been tested before.

Finally, previous cognitive behavioral interventions including cognitive behavioral stress management (CBSM) have been shown to be helpful for this population, leading to improvements in psychological functioning and less dysregulated physiology. Given the high degree of fatigue and debilitating symptoms in CFS/ME, the efficacy of a 10 session, telephone-delivered CBSM intervention on fatigue interference and neuroimmune function over time was investigated.

In Study 1, previously collected data on fatigue interference and fatigue severity were examined among 95 women with CFS/ME and 67 fatigued breast cancer survivors approximately 5 years post treatment. Analyses controlled for age, race/ethnicity, education level, marital status, employment status, number of children, time since diagnosis, and fatigue severity.

Women with CFS/ME were found to endorse higher fatigue interference scores, p<.001. Next, neuroimmune correlates to fatigue interference scores were assessed among the CFS/ME sample. Again controlling for relevant covariates, higher fatigue interference scores were associated with a more diminished CAR with respect to increase (CARi), p=.02. No relationships were observed between fatigue interference and the CAR with respect to ground (CARg) or IL-6 levels.

Additionally, these relationships were not amplified in the presence of high depressed mood. In Study 2, the effects of a 10-session, telephone-delivered cognitive behavioral stress management (CBSM) intervention on these variables were assessed. Participants included

93 women with CFS/ME from Study 1 who were randomized to either the CBSM (n=53) or attention-matched control condition (n=40). Results failed to identify intervention effects on changes in these variables from baseline (BL) to five months (5M) or nine months (9M) later. This may have been due to comparisons with a strong control condition, or to potential limitations in participants’ engagement via telephone.

Interestingly, the CARi, CARg, post-awakening cortisol, and IL-6 were observed to decrease significantly over time in both conditions (ps<.05). Mechanisms of change might include gains in self-efficacy due to mastery of skills in either CBSM or attention control conditions. Examination of potential lagged effects of CBSM on cortisol and IL-6 levels warrants future investigation, as lowest levels of these biomarkers were at 9M.

Future studies could also use videophone delivery of CBSM, which might bolster participant engagement in sessions and help to reach homebound or highly symptomatic CFS/ME patients. Emerging biomarkers of neuroimmune dysfunction in this population may yield insights into mechanisms underlying this elusive illness and help to identify new targets for psychosocial approaches to care.

Effects of telephone-delivered cognitive behavioral stress management intervention on fatigue interference and neuroimmune function in Chronic Fatigue Syndrome, by Daniel L. Hall. Open Access Phd Dissertations. Paper 1708 [Published online August 1, 2016]

More info:

Telephone-administered versus live group cognitive behavioral stress management for adults with CFS, by Daniel L. Hall, Emily G. Lattie, Sara F. Milrad, Sara Czaja, Mary Ann Fletcher, Nancy Klimas, Dolores Perdomo, Michael H. Antoni in Journal of Psychosomatic Research 93:41-47, Feb 2017 [Available online 8 December 2016]

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Neuromuscular strains in ME/CFS

ME Research UK research article, 2 August 2016: Neuromuscular strains

In the diagnosis and assessment of ME/CFS, there is a great need for simple objective measures that can differentiate the condition from other chronic illnesses, particularly after 24 or 48 hours when the effects of exercise can become most apparent. To date, researchers at Antwerp University Hospital have found upper limb muscle recovery is be slower in ME/CFS patients (read more), and they have also shown that ‘timed-loaded standing’ with a dumbbell (intended to simulate the performance of the torso during everyday activities) is shorter in women with ME/CFS than others, revealing a relative lack of endurance in the muscles of the trunk and arm (read more).

Similarly, an ongoing program of research at Johns Hopkins University has also shown that simple physiological challenges can have abnormal effects. These researchers have uncovered preliminary evidence that ME/CFS patients’ symptoms can be aggravated by ‘neuromuscular strain’, and that young people with the illness have more areas of the body with an ‘abnormal range of motion’ than healthy youngsters. In fact, in the young patients, they found that adding a longitudinal strain to the nerves and soft tissues provoked symptoms, suggesting that the nervous system and connective tissues of the ME/CFS patients is less compliant, i.e. more sensitive to mechanical movement, than normal.

Continuing its investigations, the group’s most recent report describes work on 60 people with ME/CFS and 20 controls, who underwent either a real neuromuscular strain for 15 minutes  (passive supine straight leg raise or SLR) or a sham leg raise that minimised strain. The SLR, which involves raising and holding up one leg while the person lies on their back on an examination table, is most often used for low-back examinations; in fact, it is a test of nerve root irritation, most often seen in sciatica or lumber disc herniation (read more). In this case, however, it was used only to give a mild to moderate strain to the muscles and nerves.

Their most interesting finding was that ME/CFS patients undergoing the SLR, which actually strained their muscles and nerves, had more body pain and concentration difficulties during the procedure than those with the sham leg raise. Not only was the mean composite symptom score significantly greater during the manoeuvre (difference of 3.52 points) in the SLR group than the sham leg raise group, but it was also greater after 24 hours (4.30 points). Also, more patients in the SLR group reported at least a two-point increase in at least three symptoms after 24 hours (44 versus 18%, respectively). As the authors say, “a sustained longitudinal strain applied to the neural and soft tissues of the lower limb was associated with an increased intensity of cardinal symptoms during the manoeuver and for up to 24 hours afterwards”.

They explain the results by pointing to the fact that, in everyday life, the nervous system has to adapt to changes as the body moves, including changes in fibre length and the sliding of nerves within their protective coat of fascia (see a review). Passive SLR exerts a pulling force on a large range of structures (lower limb peripheral nerves, dorsal root ganglia, lumbosacral nerve roots, etc.) and probably gives an elongation strain to the entire length of the spinal cord. Such increased mechanical strain may also cause the spinal blood vessels to narrow, and may stimulate mast cells to release biologically active substances, such as histamine, that worsen both acute and delayed symptoms.

Prof Kevin Fontaine, a co-author of the report, says that the findings “have practical implications for understanding why exercise and the activities of daily living might be capable of provoking CFS symptoms…If simply holding up the leg of someone with CFS to a degree that produces a mild to moderate strain is capable of provoking their symptoms, prolonged or excessive muscle strain beyond the usual range of motion that occurs during daily activities might also produce symptom flares.”

Overall, the results suggest that increased mechanical sensitivity may be a factor in the symptoms people with ME/CFS experience after even mild exertion, and the researchers’ next steps are to tease out the particular effects of strains to muscles and nerves, and to elucidate whether neural or muscular factors predominate. Day-to-day impairments in basic functioning of people with ME/CFS – which can be easily measured objectively in the consulting room, and can be provoked by simple manoeuvres like  the SLR – tend to be overlooked by healthcare professionals today, but may well have diagnostic or pathophysiological value.

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Three approaches to CFS in the UK, Australia, & Canada: lessons for democratic policy

Research abstract:

Decisions about diagnostic categories through clinical practice guidelines (CPGs) represent a central type of informal policy-making which affect the scope of publicly-regulated health services and directions for future research. We examine the development of three diverse sets of CPGs for chronic fatigue syndrome (CFS) in the United Kingdom, Canada, and Australia in order to examine diverse approaches to the development of such guidelines by medical professionals and other ‘experts’ in concert with inputs from the public, particularly those affected by the disease condition.

We argue that the CPGs formulated for CFS in the United Kingdom, Australia, and Canada reflect three contrasting modes of policy development, and that the differential levels of acceptance of these guidelines by a range of relevant parties provide guidance as to which mode of policy development is likely to be most effective and acceptable particularly in the domain of controversial or contested domains within medicine.

Three approaches to Chronic Fatigue Syndrome in the United Kingdom, Australia, and Canada: Lessons for democratic policy, by Rachel A. Ankeny, Fiona J. Mackenzie in Big Picture Bioethics: Developing Democratic Policy (Chapter in: Contested Domains, Part IV. (The International Library of Ethics, Vol. 16. pp 227-243) July 28, 2016

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