Gut bacteria play different roles in males & females with CFS

Article in AJP blog: Gut bacteria play different roles in males and females, by Megan Haggan, 29 January 2016

Gut bacteria play vastly different roles in males and females even when the microbe balance of the gut looks exactly the same, Victoria University researchers have found.
A study of gut bacteria in chronic fatigue sufferers found specific bacteria were related to debilitating symptoms.

Even when the balance of gut bacteria looked the same in each gender, the results show that certain bacteria, such as Streptococcus, Lactobacillus and Clostridium, can behave differently in males when compared with females.

The findings could change the “one size fits all approach” in which digestive issues, particularly in people with chronic fatigue syndrome, are treated.

Lead researcher and PhD candidate Amy Wallis says the study, published in Scientific Reports, also found clear evidence supporting the microgenderome – which refers to the relationship between bacteria, the immune system and sex hormones – in humans.

“We can no longer assume that a certain type of bacteria is going to do the same job in males and females, and now need to consider that each gender may respond differently to the same treatment,” Wallis says.

In a surprise finding, Wallis says high levels of Streptococcus bacteria in the gut related to more problems for males but less for females.

“This and other results with Lactobacillus bacteria show that caution is needed when using probiotics as, in some cases, it could do more harm than good,” she says.

With about 70% of the immune system sitting in the gastrointestinal tract, Wallis said disturbance in gut bacteria is directly linked to physical health and has been connected to autoimmune disease.

“There are trillions of bacteria in the gastrointestinal tract which play intricate and complex roles in achieving and maintaining both a balanced gut and optimal health so an imbalance can have wide-reaching effects.”

Victoria University’s Emeritus Professor Dorothy Bruck and Dr Michelle Ball, together with microbiologist Dr Henry Butt from Bioscreen Medical and Dr Don Lewis of CFS Discovery Clinic were also involved in the study.

“This powerful information shows us that we need to think about the gut differently when it comes to males and females,” Dr Ball says.

“It challenges the idea that bacteria are either good or bad because we now know that a good balance of bacteria for one person may not be good for the next person, so taking a probiotic without knowing what your individual system looks like may actually do more harm than good.”

More info: Support for the microgenderome: associations in a human clinical opulation, by Amy Wallis, Henry Butt, Michelle Ball, Donald P. Lewis, Dorothy Bruck in Scientific Reports 6, Article number: 19171 (2016)

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Dr Klimas video: ME/CFS research & treatment

YouTube: Dr Nancy Klimas on ME/CFS Research, Treatment

Published on Dec 2, 2016
Dr. Nancy Klimas is one of the first researcher-clinicians to treat HIV-AIDS. The first ME/CFS patient arrived at her office in 1984; and since she has applied herself in that research and research on Gulf War Illness and related disease. Deborah Waroff interviewed her at her clinic within Nova South Eastern

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Use of complementary medicine following removal of dental amalgam fillings in Norway

Research abstract:

BACKGROUND: The dental filling material amalgam is generally well tolerated. However, a small proportion of dental patients experience health complaints which they attribute to amalgam. The symptom pattern is often similar to patients with medically unexplained physical symptoms (MUPS) and the health complaints may persist after amalgam removal.

Among patients with MUPS, the use of complementary and alternative medicine (CAM) seems to be high. The aim of this survey was to describe the prevalence and range of CAM use among people with health complaints attributed to dental amalgam fillings in which the health problems persist after the removal of all amalgam fillings. Specific attention was paid to (1) self-reported effects of CAM, (2) differences in CAM use dependent on self-reported health, and (3) gender differences in self-reported CAM use.

METHODS: A survey was distributed to all members of The Norwegian dental patient association (NDPA) (n = 999), the response rate was 36.4 %. The anonymous questionnaire asked for socio-demographic data, health complaints related to former amalgam fillings, subjectively perceived health status, symptoms, and experience with therapeutic interventions, mostly from the spectrum of CAM. Only participants who had all their fillings removed, which was the vast majority, were analysed.

RESULTS: A total of 88.9 % of included respondents had used at least one CAM modality, with a higher proportion of men (95.7 %) compared to women (86.2 %, p = 0.015). The most frequently used therapies were dietary supplements, vitamins and minerals recommended by a therapist (used by 66.7 %) followed by self-prescribed dietary supplements, vitamins and minerals (59.0 %), homeopathy (54.0 %), acupuncture (48.8 %) and special diets (47.5 %).

Use of CAM was similar for participants reporting normal to good health compared to participants reporting poor health. For all but two CAM modalities, the self-reported treatment effect was better in the group reporting normal to good health compared to the group reporting poor health.

CONCLUSIONS: CAM was widely used by participants in our study, a finding similar to findings from studies of MUPS patients. To date, health problems associated with the use of dental amalgam is not an accepted diagnosis in the healthcare system. Consequently, people suffering from such complaints experience a lack of adequate treatment and support within conventional health care, which might have contributed to the high number of CAM users in this study.

Use of complementary and alternative medicine in patients with health complaints attributed to former dental amalgam fillings, by Agnete E. Kristoffersen, Frauke Musial, Harald J. Hamre, Lars Björkman, Trine Stub, Anita Salamonsen and Terje Alræk in BMC Complementary and Alternative Medicine 2016 16:22

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Pace, do not go for boom or bust says Dr Mark Porter

Times article, January 26 2016: Managing chronic fatigue is all about pace — do not go for boom or bust by Dr Mark Porter:

New research suggesting that chronic fatigue syndrome is more common in teenagers than previously thought is bound to move the condition up the NHS agenda — and not before time. CFS isn’t always taken as seriously as it should be, resulting in mismanagement that can perpetuate the problem.

This latest study by a team from the University of Bristol suggests that about one in thirty 16-year-olds struggle with the condition for at least three months, and one in fifty for six months or more. The resulting mental and physical exhaustion is having a significant impact on their education with the average participant (there were more than 5,700) missing at least half a day of schooling a week. And it exacts an even bigger toll on adults.

CFS, or myalgic encephalomyelitis (ME) as some prefer to call it, remains poorly understood but typically follows some form of illness or injury such as an infection like glandular fever, or a blow to the head sustained in an accident. Signs and symptoms vary but the classic picture is of persistent and recurrent fatigue that is exacerbated by physical or mental exertion.

Those affected may also have disturbed sleep, non-specific muscle and joint pain, headaches, sore throat and swollen glands. Mental “fogging” is another common complaint with loss of short-term memory and an inability to process complex thoughts and information. Like the fatigue, these symptoms are often worse 24 hours after a day of activity and can be triggered by setbacks such as coughs and colds, late nights and stress.

There is no specific test for CFS. The diagnosis is normally arrived at once other conditions, such as an underactive thyroid, diabetes or anaemia, have been excluded. This is all too often where medical care comes to an end and the patient is left to fend for themselves.

Time is a great healer and the outlook for most people is good — as many as nine out of ten children and half of all adults will make a full recovery — but incorrect management can prolong the illness. And it is easy to get it wrong because some of the strategies are counterintuitive. This is what I tell my patients.

It is now generally accepted — among doctors at least — that it is vital to avoid the boom-bust cycle where people do a lot on days when they feel good and take to their beds on days when they feel awful. The trick is to pace yourself across the week. Split the difference between what you can do on a good day and on a bad day, and do that every day.

Remember that activity is both physical and mental exertion, so include things like working on the computer, homework, housework, commuting, etc. Once you have got the hang of pacing yourself, you can try gradually increasing your activity level week by week. If your symptoms worsen then you are overdoing it and you need to cut back.

Regular rest and sleep are important too. Try to have five minutes rest every hour throughout the day. Don’t doze, just lie down and chill out (reading or watching your favourite TV programme don’t count as proper rest).

And while it may be tempting to take to your bed if you feel tired, too much sleep can worsen fatigue. The longer you spend in bed the less recuperative your sleep is likely to be. Adults should limit their sleep to no more than seven to eight hours a night and children should be limited to what is normal for their peers (up to nine or ten hours for younger children). This may mean staying up even when you feel washed out, and setting your alarm to get up in the morning even when you feel like a lie-in.

Last, never ignore the psychological repercussions of CFS — feeling awful for months on end will dampen the spirits of the hardiest person and is likely to accentuate their symptoms. Psychotherapy (cognitive behavioural therapy) can work wonders for some people, but will be of no benefit to others.

  • About 250,000 people in the UK are thought to have CFS/ME
  • Milder forms are not that serious but when severe it can leave victims housebound and often bedridden (the worst cases require hospital treatment)
  • The National Institute for Health and Care Excellence recently updated its guidance on CFS/ME — visit nice.org.uk for more details.
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What not to say to someone with CFS or ME

BBC Newsbeat article, by Liz Jackson, January 26, 2016: What not to say to someone with chronic fatigue syndrome or ME

Chronic fatigue syndrome (CFS) is a much misunderstood illness – but it’s also more common than previously thought. Persistent exhaustion was found to affect 2% of 16-year-olds – and almost twice as many girls as boys, according to research from the University of Bristol. Three people with CFS, also known as myalgic encephalomyelitis or ME, tell us the
most frustrating things they hear.The NHS says CFS is a collection of symptoms which can have a range of effects on every day life, from ‘mild’ to ‘severe’.

Don’t say: ‘We all get tired’

Charlotte Robertson is 19 and from Northumberland. Even though she’s had CFS symptoms since she was 11, people still make hurtful comments. ‘They will say, ‘Oh yeah we all get tired,’ or, ‘Come on it’s just half an hour, you’ll be fine,” she says. ‘It’s frustrating having to justify things the whole time and sometimes it can be quite upsetting. It’s not
intended to hurt, it’s just thoughtlessness.’

Don’t say: ‘It’s laziness’

Kirstie Miller, 17, from Westbury in Wiltshire, is still trying to take her GCSEs because of her CFS. ‘People think it’s laziness, but it’s not,’ she says. ‘When you bring it up with people they say, ‘Oh that’s where you get tired isn’t it?’ but it’s so much more.’

Don’t say: ‘Why don’t you just take a nap?’

‘People say, ‘You just take a nap every now and then don’t you?’ But if I take a nap I’d feel worse than before I took a nap.’ She said her school ‘didn’t like’ how much time off she took. ‘It felt more like they were against me, and were more concerned about how their attendance would look rather than my health.’

Don’t say: ‘Can’t you just get on with it?’

‘There are some people who just see the tiredness, they don’t see the flu symptoms or the sore throat or achy joints and just think that you can get on with it, when in reality it’s completely the opposite,’ said Sophie Cockerton, from Beverley in Yorkshire. The 16-year-old has had CFS for five years and is taking a year off from her A-levels because of
the condition. ‘It’s hard to get up and do stuff when you don’t have the basic energy to do it,’ she says. ‘My friends are supportive but nobody really knows what it is… it’s just given a name and it doesn’t express all the different things within it.’

How do you describe CFS to someone who’s never had it?

Charlotte… ‘Like a bone-crushing tiredness. Like somebody sitting on you, or you’re walking through treacle. Before I was diagnosed I was sleeping for 18 hours a day, I was finding it really difficult to walk.  I got loads of headaches and I collapsed a couple of times.’

Kirstie… ‘Brain fog… like a shadow hanging over you all the time. Your whole body feels so heavy that it feels like you can’t do it. Even moving my legs slightly each day kills.’

Sophie… ‘A barrier at the front of my mind. The more information has to pass through the barrier the worse I get. If I’m doing maths and it has to pass through it quite a few times, then I get more and more tired.’

What is it like to live with CFS?

Before Kirstie became ill three years ago, she used to study dance, drama and singing for her GCSEs. ‘I’m walking on crutches, I’m meant to be in a wheelchair but I refused to be in one. People see it as, ‘Oh at least you’re still doing things,’ but to us, our lives have stopped and theirs have carried on. All of your friends are off to university in September and you’re still here taking your GCSEs.’

Charlotte says CFS makes it hard for her to study enough at the University of Aberdeen. ‘They say for every course you’re supposed to do about 150 hours of work. That’s not going to be realistic for me, so how do I make the most of what I’ve got?’

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The complexity of diagnosing POTS

Research highlights:

  • We evaluated how the diagnosis can be missed in a single orthostatic stress test
  • Orthostatic tachycardia is more prominent in the morning, but not always.
  • Symptoms were more frequent in the morning, but not during majority of the tests.
  • Orthostatic hypotension can be accompanied in POTS
  • We suggest repeated orthostatic stress tests in clinically suspected POTS patients.

Research abstract:

We investigated how the diagnosis of postural orthostatic tachycardia syndrome (POTS) would be changed due to diurnal variability in orthostatic tachycardia. The orthostatic vital sign (OVS) test was administered to each patient twice, in the afternoon of the day of admission and the next morning (n=113).

Forty-six patients were diagnosed with POTS, and the remaining 67 patients were assigned to non-POTS group. Heart rate increments after standing were larger in the morning than in the afternoon in every group (all P < 0.001).

Among the POTS patients, 82.6% fulfilled the diagnostic criteria for POTS in the morning, and 52.2% in the afternoon. The majority of the POTS group (65.2%) displayed normal result on single OVS test.

Orthostatic intolerance symptoms were provoked in only 45.7% of the POTS patients, more frequently in the morning. In conclusion, diurnal variability in hemodynamic parameters and provoked symptoms significantly challenged the diagnosis of POTS.

The complexity of diagnosing postural orthostatic tachycardia syndrome: influence of the diurnal variability by Jangsup Moon, MD, PhD1, Han Sang Lee, MD1, Jung-Ick Byun, MD, Jun-Sang Sunwoo, MD, Jung-Won Shin, MD, Jung-Ah Lim, MD, Tae-Joon Kim, MD, Yong-Won Shin, MD, Keon-Joo Lee, MD, Daejong Jeon, PhD, Keun-Hwa Jung, MD, PhD, Soon-Tae Lee, MD, PhD, Ki-Young Jung, MD, PhD, Kon Chu, MD, PhD, Sang Kun Lee, MD, PhD in Journal of the American Society of Hypertension, January 9, 2016

[1These two authors contributed equally to this work.]

 

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Mitochondrial DNA variants correlate with symptoms in ME/CFS

Research abstract:

Background: Mitochondrial dysfunction has been hypothesized to occur in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), a disease characterized by fatigue, cognitive difficulties, pain, malaise, and exercise intolerance. We investigated whether haplogroup, single nucleotide polymorphisms (SNPs), or heteroplasmy of mitochondrial DNA (mtDNA) were associated with health status and/or symptoms.

Methods: Illumina sequencing of PCR-amplified mtDNA was performed to analyze sequence and extent of heteroplasmy of mtDNAs of 193 cases and 196 age- and gender-matched controls from DNA samples collected by the Chronic Fatigue Initiative. Association testing was carried out to examine possible correlations of mitochondrial sequences with case/control status and symptom constellation and severity as reported by subjects on Short Form-36 and DePaul Symptom Questionnaires.

Results: No ME/CFS subject exhibited known disease-causing mtDNA mutations. Extent of heteroplasmy was low in all subjects. Although no association between mtDNA SNPs and ME/CFS vs. healthy status was observed, haplogroups J, U and H as well as eight SNPs in ME/CFS cases were significantly associated with individual symptoms, symptom clusters, or symptom severity.

Conclusions: Analysis of mitochondrial genomes in ME/CFS cases indicates that individuals of a certain haplogroup or carrying specific SNPs are more likely to exhibit certain neurological, inflammatory, and/or gastrointestinal symptoms. No increase in susceptibility to ME/CFS of individuals carrying particular mitochondrial genomes or SNPs was observed.

Mitochondrial DNA variants correlate with symptoms in myalgic encephalomyelitis/ chronic fatigue syndrome, by Paul Billing-Ross, Arnaud Germain, Kaixiong Ye, Alon Keinan, Zhenglong Gu and Maureen R. Hanson in Journal of Translational Medicine 2016, 14:19

Mitochondrial DNA and ME/CFS: A Guide to the Hanson Lab’s 2016 JTM Publication

This is a simplified explanation of the 2016 academic paper published in the Journal of Translational Medicine:

Mitochondrial DNA variants correlate with symptoms in myalgic encephalomyelitis/ chronic fatigue syndrome, by Paul Billing-Ross, Arnaud Germain, Kaixiong Ye, Alon Keinan, Zhenglong Gu, and Maureen R. Hanson J. Translational Medicine. 2016, 14:19

Patients with ME/CFS experience a profound lack of energy, severe fatigue, along with a variety of other symptoms, including one or more of the following: muscle pain, headaches, gastrointestinal discomfort, difficulty concentrating, exacerbation of symptoms following exercise, abnormal regulation of blood pressure and heart rate, and unrefreshing sleep. Mitochondria, sub-cellular organelles are responsible for producing ATP, the energy coinage of the cell, through conversion of glucose. Therefore, a logical approach to learn more about a disease affecting energy is probing of the function of mitochondria.

Mitochondria are made up of molecules encoded by the nuclear genome–DNA located in the nucleus–as well as the mitochondrial genome—a small amount of DNA present within each organelle. Defects in mitochondrial DNA lead to devastating genetic diseases, with such symptoms as brain abnormalities, severe fatigue, blindness or defective heart function—and can be fatal.

The mitochondrial genome of healthy humans also exhibits some natural variation—a single component of the mitochondrial DNA sometimes differs between one human and another—this is known as a SNP (single nucleotide polymorphism, “snip”). Often more than one SNP differs between one population of humans and another—for example, mitochondrial genomes whose origin can be traced to France differ in a number of SNPs from those in people in Central Asia. These different types of mitochondrial genomes, based on a specific set of SNPs, are referred to as haplogroups.

Even people whose mitochondrial DNA belongs to the same haplogroup can differ among one another because of some variation in additional SNPs. Some mitochondrial SNPs have been associated with various characteristics, such as adaptation to cold weather or high altitude environments and have been implicated in susceptibility to diabetes and various inflammatory diseases. An informative review of the role of mitochondria in disease has been written by Wallace and Chalkia, researchers at the University of Pennsylvania.

A further complexity of mitochondrial genetics is that there are many individual mitochondria within the same cell, and thus many copies of mitochondrial DNA in each cell. Sometimes new mutations arise so that some of the copies of DNA within the same cell, and therefore within the same person, differ from one another. This situation is called “heteroplasmy”. As cells grow and multiply, by chance there can be uneven distribution of normal vs. abnormal DNA to different cells. If mitochondrial DNA with a harmful mutation becomes the predominant type in a particular tissue, serious symptoms will emerge.

In our recent paper, work that was primarily supported by the Chronic Fatigue Initiative, we sequenced the mitochondrial DNA from a cohort of ME/CFS patients and healthy individuals, using DNA extracted from white blood cells stored in the biobank developed by the Chronic Fatigue Initiative.

We asked four primary questions:

  • Were any of the ME/CFS patients identified by 6 well-known ME/CFS experts misdiagnosed and are actually victims of a mitochondrial genetic disease?
  • Do people with ME/CFS carry more copies of mitochondrial DNA with harmful mutations than healthy people (heteroplasmy)?
  • Are people belonging to one haplogroup more likely to fall victim to ME/CFS than another?
  • Are people who have particular SNPs more likely to experience particular symptoms or have increased severity of symptoms?

Our work showed that none of the blood samples obtained from 193 patients identified by the CFI’s 6 expert M.D.s gave any indication of a mitochondrial genetic disease.

Furthermore, we found no difference in the degree of heteroplasmy between patients and healthy individuals.

We also observed no increased susceptibility to ME/CFS among individuals carrying particular haplogroups or SNPs within a haplogroup.

However, we did detect associations of particular SNPs with certain symptoms and/or their severity. For example, we did find that individuals with particular SNPs were more likely to have gastrointestinal distress, chemical or light sensitivity, disrupted sleep, or flu-like symptoms. This finding does NOT mean that if your mitochondrial DNA carries one of these SNPs, you will inevitably experience a particular symptom or have higher severity of some symptoms. Instead, because a particular SNP was seen more often in ME/CFS patients with certain characteristics, individuals that carry that SNP are predicted to be at greater risk of experiencing particular types of symptoms once they become ill.

This study demonstrates the importance of a well-characterized cohort of patients and controls along with detailed clinical information about their experience of illness. Without the data from the lengthy patient questionnaires collected along with the subject’s blood, we could not have correlated SNPs with patient characteristics.

While the materials from the CFI subjects are extremely valuable and our results are statistically significant, greater numbers of subjects must be analyzed to determine whether the correlations we detected continue to hold up when more patients are studied, and whether such correlations exist within people carrying other haplogroups.

Due to the European origin of most of the ancestors of the CFI subjects, most belong to haplogroup H, the most common European haplogroup. A much larger number of haplogroup H subjects, as well as large cohorts of individuals with other haplogroups, will be necessary to analyze to dissect out other possible correlations or to determine whether or not any of the correlations we detected with a relatively small population are spurious. With more subjects, we might also be able to detect additional correlations that were not obvious from our initial study.

Whether or not the genetic correlations we have observed are verified or not through further work, our study indicates an important hypothesis that should be tested in ME/CFS. How much of the variation in symptoms between different individuals results from their different nuclear and/or mitochondrial genetic makeup, rather than variation in the inciting cause?

A puzzling aspect of ME/CFS has been the diversity of symptoms and the variation of their severity among different individuals. These differences should not be taken as proof that more than one insult was the initiating factor, nor that different patients have different underlying problems. It remains possible that much of the diversity of the manifestation of the illness results from genetic diversity rather than the existence of multiple fundamental causes.

Future Studies:

Whether mitochondria are impaired in ME/CFS has not been definitely determined. Mitochondria could be affected either directly or indirectly in the disease. For example, some disturbance in metabolism or regulation of genes could prevent mitochondria from functioning properly. Theoretically, mitochondria could be affected through an unknown autoimmune mechanism. We have begun to investigate the properties of mitochondria in ME/CFS further by examining how well they function in white blood cells, relative to healthy individuals.

This article was written by Professor Maureen Hanson and is licensed under a Creative Commons Attribution 4.0 International License.

Mitochondrial DNA Variations May Spur Symptoms in People with Form of Chronic Fatigue, February 10, 2016, by Patricia Inacio, PhD

 

 

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Walking & co-ordination problems in ME/CFS

ME Research UK overview article: Walking & co-ordination problems

Mechanistic factors that compromise automaticity of walking. From Automaticity of walking. Clark DJ. Front. Hum Neurosci, 05 May 2015.

Mechanistic factors that compromise automaticity of walking. From Automaticity of walking. Clark DJ. Front. Hum Neurosci, 05 May 2015

 

We already know that many ME/CFS patients have difficulties standing (orthostasis), particularly standing still (see Standing up for ME). In fact, symptoms of ‘orthostatic intolerance’ can often be found in these patients during clinical assessment (read more) , and there is also evidence that they can have problems walking; for example, one ME Research UK-funded investigation found that the physiological cost of walking was significantly greater for ME/CFS patients than for healthy people, though the reasons for these higher energy demands remain unknown.

Recently, researchers at Antwerp University Hospital have been taking a more in-depth look at the physical capabilities of people with ME/CFS. In one study, they examined upper limb muscle recovery – a feature that had never been subjected to research in ME/CFS, despite the fact that these muscles are most frequently used for everyday activities, such as combing and washing hair, ironing and cooking (read more). After an upper limb exercise challenge, muscle recovery was significantly slower in ME/CFS patients. In another study, they showed that ‘timed-loaded standing’ with a dumbbell (intended to simulate the performance of the torso during everyday activities) was much shorter in women with ME/CFS than in women with osteoporosis or healthy women, revealing a lack of endurance in the muscles of the trunk and arm (read more).

Continuing their programme of work, these Belgian researchers have now examined ‘automaticity’ in women with ME/CFS (read the report). Automaticity involves being able do things ‘automatically’, without the mind being occupied with more basic tasks. For example, the ability to walk and speak at the same time is an example of automaticity; famously, Julius Caesar was able to ride a horse, hold a conversation and read a book at the same time. The facility involves habit, of course; once an activity has been practiced enough, the mind can focus on other activities or thoughts while performing an ‘automatized’ task.

Automaticity while walking (‘gait automaticity’) is no simple task, and a variety of factors can contribute to its impairment, including the central nervous system damage/injury, vision problems, excessive physical effort or pain itself (read more). In modern medical research, assessing gait automaticity is a useful way of assessing frailty and is a good predictor of falls among the frail elderly inside institutions. In ME/CFS, we already know that patients walk far less than healthy people, and that they walk more slowly and at a higher metabolic cost than normal. Also, we know that cognitive performance is impaired in people with ME/CFS, particularly memory and attention (read more), and that sensory ‘overload’ phenomena can be a feature, so it is possible that their cognitive capacity to take on two or more tasks at the same time is reduced.

For this study, the researchers adapted a standard gait automaticity test for use by ME/CFS patients, based on the researchers’ previous observation that ME/CFS patients had difficulties positioning themselves in space when lacking visual data. In the adapted version – the ‘Stops Walking with Eyes Closed with secondary Cognitive Task” (SWECCT) test – patients started to walk with their eyes open (for 7 metres), were then asked to close their eyes and continue walking (for 7 metres), and were then told to continue walking but were asked a simple cognitive question, “How much is 100 minus 7?” Simple enough, you might say, but the results were unexpected.

When starting to walk, only one person out of 38 nondisabled controls (2.6%) looked down at the ground first, whereas eight of the 34 patients (23.5%) checked the floor. After closing their eyes and being asked the question, 19 of the patients (55.9%) found the need to stop walking compared with only 2 (5.3%) of healthy controls. The researchers also observed the ‘deterioration’ in walking at each of these points, i.e. a change in gait less dramatic than stopping, which ranged from mild deterioration (slowing down or extending the arms to keep balance) to severe (losing direction or changing pace dramatically). While walking with closed eyes, 38.2% of ME/CFS patients had either a severe deterioration in their gait or had stopped walking compared with 2.6% of the healthy controls. When the cognitive task was added into the mix, these figures rose to 32 out of 34 (94.1%) of ME/CFS patients compared with just 8 out of 38 (21.1%) controls. Interestingly, the problems ME/CFS patients had with walking and co-ordination was mirrored by a lack of endurance of muscles in arms and trunk, a weakness that the research group in Belgium had previously identified (read their report).

The fact that ME/CFS patients find it a challenge to dual- or multi-task when walking (and, by implication, performing other activities) chimes with findings in patients with other illnesses. We already know, for example, that stroke or Parkinson’s patients and elderly people have a decline in the ability to dual- or multi-task, leading to a deterioration in automaticity and attention. In these groups, the gait becomes more insecure and the risk of falling increases (read a review). Given this, it seems important to ask ME/CFS patients about their experience of falls, either at home or outside; the results may come as a shock to GPs and other healthcare professionals.

Many people with ME/CFS will not be surprised by these results – after all, they have lived for many years with the cognitive impairment and neurological dysfunction that underlie problems with automaticity. And established ME/CFS clinicians have long recognised these symptoms in their patients; as their Canadian Consensus Document said in 2003: “Ataxia, muscle weakness and fasciculations, loss of balance and clumsiness commonly occur. There may be an inability to automatically attune to the environment…and temporary loss of basic habituated motor programs such as walking”. Yet, the day-to-day impairments in basic functioning of people with ME/CFS remain overlooked by the wider clinical and scientific community. To date, in their programme of research, the Belgian researchers have reported a lack of endurance of the muscles in the trunk and arms; a dramatic fall in upper arm strength over a short period; and (in this report) a deterioration in gait automaticity – all of which can yield potentially important clinical information. As we’ve said before, these aspects of everyday living are rarely discussed in the modern literature but may well have clinical or diagnostic value and should not be ignored by medicine today.

Sources
1. Reduced gait automaticity in female patients with chronic fatigue syndrome: Case-control study. Eyskens JB, et al. J Rehabil Res Dev, 2015; 52(7): 805-14. Read more (full text).
2. Neurologic aspects and falls. Fasano A & Plotnik M. Clin Cases Miner Bone Metab, 2012 Jan; 9(1): 17-20. Read more (full text).
3. Timed loaded standing in female chronic fatigue syndrome compared with other populations. Eyskens JB, et al. JRRD, 2015; 52 (1).21-30. Read more (full text).
4. Recovery of upper limb muscle function in chronic fatigue syndrome with and without fibromyalgia. Ickmans K, et al. Eur J Clin Invest, 2014 Feb; 44(2): 153–9. Read more (abstract).
5. Automaticity of walking: functional significance, mechanisms, measurement and rehabilitation strategies. Clark DJ. Front. Hum Neurosci, 05 May 2015. Read more (full text).

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The downside of mindfulness

Guardian article: Is mindfulness making us ill? by Dawn Foster, Saturday 23 January 2016

It’s the relaxation technique of choice, popular with employers and even the NHS. But some have found it can have unexpected effects

I am sitting in a circle in a grey, corporate room with 10 housing association employees – administrators, security guards, cleaners – eyes darting about nervously. We are asked to eat a sandwich in silence. To think about every taste and texture, every chewing motion and bite. Far from being relaxed, I feel excruciatingly uncomfortable and begin to wonder if my jaw is malfunctioning. I’m here to write about a new mindfulness initiative, and since I’ve never to my knowledge had any mental health issues and usually thrive under stress, I anticipate a straightforward, if awkward, experience.

Then comes the meditation. We’re told to close our eyes and think about our bodies in relation to the chair, the floor, the room: how each limb touches the arms, the back, the legs of the seat, while breathing slowly. But there’s one small catch: I can’t breathe. No matter how fast, slow, deep or shallow my breaths are, it feels as though my lungs are sealed. My instincts tell me to run, but I can’t move my arms or legs. I feel a rising panic and worry that I might pass out, my mind racing. Then we’re told to open our eyes and the feeling dissipates. I look around. No one else appears to have felt they were facing imminent death. What just happened?

For days afterwards, I feel on edge. I have a permanent tension headache and I jump at the slightest unexpected noise. The fact that something seemingly benign, positive and hugely popular had such a profound effect has taken me by surprise.

Mindfulness, the practice of sitting still and focusing on your breath and thoughts, has surged in popularity over the last few years, with a boom in apps, online courses, books and articles extolling its virtues. It can be done alone or with a guide (digital or human), and with so much hand-wringing about our frenetic, time-poor lifestyles and information overload, it seems to offer a wholesome solution: a quiet port in the storm and an opportunity for self-examination. The Headspace app, which offers 10-minute guided meditations on your smartphone, has more than three million users worldwide and is worth over £25m. Meanwhile, publishers have rushed to put out workbooks and guides to line the wellness shelves in bookshops.

Large organisations such as Google, Apple, Sony, Ikea, the Department of Health and Transport for London have adopted mindfulness or meditation as part of their employee packages, claiming it leads to a happier workforce, increased productivity and fewer sick days. But could such a one-size-fits-all solution backfire in unexpected ways?

Even a year later, recalling the sensations and feelings I experienced in that room summons a resurgent wave of panic and tightness in my chest. Out of curiosity, I try the Headspace app, but the breathing exercises leave me with pins and needles in my face and a burgeoning terror. “Let your thoughts move wherever they please,” the app urges. I just want it to stop. And, as I discovered, I’m not the only person who doesn’t find mindfulness comforting.

Claire, a 37-year-old in a highly competitive industry, was sent on a three-day mindfulness course with colleagues as part of a training programme. “Initially, I found it relaxing,” she says, “but then I found I felt completely zoned out while doing it. Within two or three hours of later sessions, I was starting to really, really panic.” The sessions resurfaced memories of her traumatic childhood, and she experienced a series of panic attacks. “Somehow, the course triggered things I had previously got over,” Claire says. “I had a breakdown and spent three months in a psychiatric unit. It was a depressive breakdown with psychotic elements related to the trauma, and several dissociative episodes.”

Four and a half years later, Claire is still working part-time and is in and out of hospital. She became addicted to alcohol, when previously she was driven and high-performing, and believes mindfulness was the catalyst for her breakdown. Her doctors have advised her to avoid relaxation methods, and she spent months in one-to-one therapy. “Recovery involves being completely grounded,” she says, “so yoga is out.”

Research suggests her experience might not be unique. Internet forums abound with people seeking advice after experiencing panic attacks, hearing voices or finding that meditation has deepened their depression after some initial respite. In their recent book, The Buddha Pill, psychologists Miguel Farias and Catherine Wikholm voice concern about the lack of research into the adverse effects of meditation and the “dark side” of mindfulness. “Since the book’s been published, we’ve had a number of emails from people wanting to tell us about adverse effects they have experienced,” Wikholm says. “Often, people have thought they were alone with this, or they blamed themselves, thinking they somehow did it wrong, when actually it doesn’t seem it’s all that uncommon.”

One story in particular prompted Farias to look further into adverse effects. Louise, a woman in her 50s who had been practising yoga for 20 years, went away to a meditation retreat. While meditating, she felt dissociated from herself and became worried. Dismissing it as a routine side-effect of meditation, Louise continued with the exercises. The following day, after returning home, her body felt completely numb and she didn’t want to get out of bed. Her husband took her to the doctor, who referred her to a psychiatrist. For the next 15 years she was treated for psychotic depression.

Farias looked at the research into unexpected side-effects. A 1992 study by David Shapiro, a professor at the University of California, Irvine, found that 63% of the group studied, who had varying degrees of experience in meditation and had each tried mindfulness, had suffered at least one negative effect from meditation retreats, while 7% reported profoundly adverse effects including panic, depression, pain and anxiety. Shapiro’s study was small-scale; several research papers, including a 2011 study by Duke University in North Carolina, have raised concerns at the lack of quality research on the impact of mindfulness, specifically the lack of controlled studies.

Farias feels that media coverage inflates the moderate positive effects of mindfulness, and either doesn’t report or underplays the downsides. “Mindfulness can have negative effects for some people, even if you’re doing it for only 20 minutes a day,” Farias says. “It’s difficult to tell how common [negative] experiences are, because mindfulness researchers have failed to measure them, and may even have discouraged participants from reporting them by attributing the blame to them.”

Kate Williams, a PhD researcher in psychiatry at the University of Manchester and a mindfulness teacher, says negative experiences generally fall into one of two categories. The first is seen as a natural emotional reaction to self-exploration. “What we learn through meditation is to explore our experiences with an open and nonjudgmental attitude, whether the experience that arises is pleasant, unpleasant or neutral,” she says.

The second, Williams says, is more severe and disconcerting: “Experiences can be quite extreme, to the extent of inducing paranoia, delusions, confusion, mania or depression.” After years of training, research and practice, her own personal meditation has included some of these negative experiences. “Longer periods of meditation have at times led me to feel a loss of identity and left me feeling extremely vulnerable, almost like an open wound,” Williams says. As an experienced mindfulness teacher, however, she says she is able to deal with these negative experiences without lasting effect.

Rachel, a 34-year-old film-maker from London, experimented with mindfulness several years ago. An old school friend who had tried it attempted to warn her off. “He said, ‘It’s hardcore – you’ll go through things you don’t want to go through and it might not always be positive.’ I suppose sitting with yourself is hard, especially when you’re in a place where you don’t really like yourself. Meditation can’t ‘fix’ anyone. That’s not what it’s for.”

After a few months of following guided meditations, and feeling increasingly anxious, Rachel had what she describes as a “meltdown” immediately after practising some of the techniques she’d learned; the relationship she was in broke down. “That’s the horrible hangover I have from this: instead of having a sense of calm, I overanalyse and scrutinise everything. Things would run round in my mind, and suddenly I’d be doing things that were totally out of character, acting very, very erratically. Having panic attacks that would restrict my breathing and, once, sent me into a blackout seizure on the studio floor that involved an ambulance trip to accident and emergency.” Rachel has recovered to some extent; she experiences similar feelings on a lower level even today, but has learned to recognise the symptoms and take steps to combat them.

So are employers and experts right to extol the virtues of mindfulness? According to Will Davies, senior lecturer at Goldsmiths and author of The Happiness Industry, our mental health has become a money-making opportunity. “The measurement of our mental and emotional states at work is advancing rapidly at the moment,” he says, “and businesses are increasingly aware of the financial costs that stress, depression and anxiety saddle them with.”

Rather than removing the source of stress, whether that’s unfeasible workloads, poor management or low morale, some employers encourage their staff to meditate: a quick fix that’s much cheaper, at least in the short term. After all, it’s harder to complain that you’re under too much stress at work if your employer points out that they’ve offered you relaxation classes: the blame then falls on the individual. “Mindfulness has been grabbed in recent years as a way to help people cope with their own powerlessness in the workplace,” Davies says. “We’re now reaching the stage where mandatory meditation is being discussed as a route to heightened productivity, in tandem with various apps, wearable devices and forms of low-level employee surveillance.”

One former Labour backbencher, Chris Ruane, recently proposed meditation for civil servants, on the basis that it would cut Whitehall costs by lowering sick leave through stress, rather than making the workplace and jobs less stressful in the first place. “The whole agenda is so fraught with contradictions, between its economic goals and its supposedly spiritual methods,” Davies argues. “It’s a wonder anyone takes it seriously at all.”

Mindfulness has also been adopted by the NHS, with many primary care trusts offering and recommending the practice in lieu of cognitive behavioural therapy (CBT). “It fits nicely with the Nutribullet-chugging, clean-eating crowd, because it doesn’t involve any tablets,” says Bethan, a mental health nurse working in east London. “My main problem with it is that it’s just another word for awareness.”

Over the past few years, Bethan has noticed mindfulness mentioned or recommended increasingly at work, and says many colleagues have been offered sessions and training as part of their professional development. But the move towards mindfulness delivered through online or self-help programmes isn’t for everyone. “It’s fine, but realising you have depression isn’t the same as tackling it,” she says. “I don’t see it as any different from the five-a-day campaign: we know what we should be eating, but so many of us don’t do it. We know that isolating ourselves isn’t helpful when we feel blue, but we still do that.”

Part of the drive is simple cost-cutting. With NHS budgets squeezed, resource-intensive and diverse therapies that involve one-on-one consultations are far more expensive to dispense than online or group therapies such as mindfulness. A CBT course costs the NHS £950 per participant on average, while mindfulness-based cognitive therapy, because it’s delivered in a group, comes in at around £300 a person. “It’s cheap, and it does make people think twice about their choices, so in some respects it’s helpful,” Bethan says.

But in more serious cases, could it be doing more harm than good? Florian Ruths has researched this area for 10 years, as clinical lead for mindfulness-based therapy in the South London and Maudsley NHS foundation trust. He believes it is possible to teach yourself mindfulness through apps, books or online guides. “For most people, I think if you’re not suffering from any clinical issues, or illness, or from stress to a degree that you’re somewhat disabled, it’s fine,” he says. “We talk about illness as disability, and disability may arise through sadness, it may arise through emotional disturbance, like anxiety. Then, obviously, it becomes a different ballgame, and it would be good to have a guided practice to take you through it.” This runs counter to the drive towards online mindfulness apps, delivered without supervision, and with little to no adaptation to individual needs or problems.

But for Ruths, the benefits outweigh the risk of unusual effects. “If we exercise, we live longer, we’re slimmer, we’ve got less risk of dementia, we’re happier and less anxious,” he says. “People don’t talk about the fact that when you exercise, you are at a natural risk of injuring yourself. When people say in the new year, ‘I’m going to go to the gym’ – out of 100 people who do that, about 20 will injure themselves, because they haven’t been taught how to do it properly, or they’ve not listened to their bodies. So when you’re a responsible clinician or GP, you tell someone to get a good trainer.”

People may not know they have a bipolar vulnerability until they try mindfulness
Certain mental health problems increase the risk of adverse effects from mindfulness. “If you have post-traumatic stress disorder, there is a certain chance that you may find meditation too difficult to do, as you may be re-experiencing traumatic memories,” Ruths says. “Once again, it’s about having experienced trainers to facilitate that. We’ve seen some evidence that people who’ve got bipolar vulnerability may struggle, but we need to keep in mind that it may be accidental, or it may be something we don’t know about yet.”

Of course, people may not know they have a bipolar vulnerability until they try mindfulness. Or they might have repressed the symptoms of post-traumatic stress disorder, only for these to emerge after trying the practice.

How can an individual gauge whether they’re likely to have negative side-effects? Both Farias and Ruths agree there isn’t a substantial body of evidence yet on how mindfulness works, or what causes negative reactions. One of the reasons is obvious: people who react badly tend to drop out of classes, or stop using the app or workbook; rather than make a fuss, they quietly walk away. Part of this is down to the current faddishness of mindfulness and the way it’s marketed: unlike prescribed psychotherapy or CBT, it’s viewed as an alternative lifestyle choice, rather than a powerful form of therapy.

Claire is clear about how she feels mindfulness should be discussed and delivered: “A lot of the people who are trained in mindfulness are not trained in the dangers as well as the potential benefits,” she says. “My experience of people who teach it is that they don’t know how to help people if it goes too far.”

There is currently no professionally accredited training for mindfulness teachers, and nothing to stop anyone calling themselves a mindfulness coach, though advocates are calling for that to change. Finding an experienced teacher who comes recommended, and not being afraid to discuss negative side-effects with your teacher or GP, means you’re far more likely to enjoy and benefit from the experience.

As both Claire and I have found, there are alternative relaxation methods that can keep you grounded: reading, carving out more time to spend with friends, and simply knowing when to take a break from the frenetic pace of life. Meanwhile, Claire’s experience has encouraged her to push for a better understanding of alternative therapies. “No one would suggest CBT was done by someone who wasn’t trained,” she says. “I’d like to see a wider discussion about what mindfulness is – and on what the side-effects can be.”

Some names have been changed.

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Comparing the DePaul Symptom Questionnaire with doctors’assessments

Research abstract:

Background: Diagnostic assessment of chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) is largely based on a two part process; screening patients who might meet criteria and following up this assessment with physicians’ clinical evaluation of a range of inclusionary symptoms and exclusionary illnesses.

Purpose: The aim was to assess how well the DePaul Symptom Questionnaire (DSQ) screened for patients who were ultimately diagnosed by physicians using the Canadian Consensus Criteria (CCC).

Methods: Sixty-four patients referred for evaluation of possible CFS or ME were screened initially using the DSQ, and then evaluated and subsequently diagnosed by physicians. To assess the consistency between the self-report DSQ and the physicians’ diagnosis, sensitivity and specificity as well as predictive values were calculated.

Results: The DSQ identified 60 and the physicians identified 56 as having a CCC diagnosis. The overall agreement between the two ratings on the diagnostic assessment part was moderate (Kappa = 0.45, p < .001). The sensitivity of DSQ was good
(92%) while the specificity was moderate (75%). Positive and negative predictive values were 98% and 38%, respectively.

Conclusion: DSQ is useful for detecting and screening symptoms consistent with a CCC diagnosis in clinical practice and research. However, it is important for initial screening of self-report symptoms to be followed up by subsequent medical and psychiatric examination in order to identify possible exclusionary medical and psychiatric disorders.

Comparing the DePaul Symptom Questionnaire with physician assessments:
a preliminary study, by Elin B. Strand, Kristine Lillestøl, Leonard A. Jason, Kari Tveito, Lien My Diep, Simen Strand Valla, Madison Sunnquist, Ingrid B. Helland, Ingrid Herder & Toril Dammen in Fatigue: Biomedicine, Health & Behavior [Published online: 19 Jan 2016]

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