Peterson’s atypical subset opens new view of ME/CFS

Simmaron research blog post, by Cort Johnson, 5 April 2017: Peterson’s Atypical Subset Opens New View of ME/CFS in Columbia/Simmaron Publication

“We now have biological evidence that the triggers for ME/CFS may involve distinct pathways to disease, or, in some cases, predispose individuals to the later development of serious comorbidities.” Dr. Mady Hornig.

The Subset Makers

Over the past couple of years the Simmaron Research Foundation and Center for Infection and Immunity at Columbia University and others have begun to pump out some long awaited subsets. This week, new findings were published by Columbia and Simmaron that define 2 subsets.

They’re not the usual suspects (infectious trigger vs non-infectious trigger; gradual onset vs acute onset). In fact, they involve subsets few would have predicted a couple of years ago. They suggest that we might be in for some real surprises over time.

Short Duration vs Long Duration Subset: Two years ago, the Simmaron Research Foundation collaborated with Ian Lipkin and other doctors to uncover a subset few had anticipated: short duration patients vs long duration patients.

The Atypical Patient or “Peterson Subset”:  Now comes a subset of atypical chronic fatigue syndrome (ME/CFS) patients (the “Peterson Subset”) that Dr. Peterson had long wondered about. These patients had ME/CFS but tended to follow a different course. Some had had unusual exposures (unusual infections, blood transfusions); others developed serious illnesses (cancer, autoimmune diseases, etc.) that Dr. Peterson didn’t see in the rest of the population.

Dr. Hornig talked about how the atypical subset came about. Like so many breakthroughs in medicine it took a careful and observant doctor/researcher to bring it about. This study, she said, was a testament to:

“Dr. Peterson’s clinical acumen, his long-term follow up of this patient population and his attentiveness to the full range of complex, serious medical disorders that might develop. The classical group had been followed for similar lengths of time but had not developed these more severe, serious comorbidities.”

The atypical vs classical distinction was pre-established by Dr. Peterson before the analysis. Based on his wide-ranging clinical experience, the atypical group stood out for either: 1) the presence of unusual precursors (triggers) of ME/CFS or; 2) the development of more unusual and severe comorbidities over varying (and often long-term) intervals after ME/CFS onset.”

Dr. Peterson felt the unusual outcomes weren’t just the result of chance: something different was going on – something that he felt as a doctor needed to be identified. What if, he thought, there was a way to identify these unusual patients before they started developing these significant illnesses. Then he could do more extensive cancer or immune screens and watch these patients more closely.

Plus, these patients could be inadvertently bollixing up the results of ME/CFS studies. Peterson was so sure, in fact, this subset was different that he had its effects assessed during the first Simmaron/CII spinal fluid study. Peterson turned out to be right: the atypical subset had such an effect on the results that it had to be removed.

The next step was a study comparing the two groups. Using Dr. Peterson’s spinal fluid samples, The Center for Infection and Immunity (CII) at Columbia found that “Peterson Subset” not only had markedly different immune findings but displayed a different pattern of immune results as well. Dr. Peterson is Scientific Advisor to Simmaron and Gunnar Gottschalk was its Research Manager.

Immune network analysis of cerebrospinal fluid in myalgic encephalomyelitis/chronic fatigue syndrome with atypical and classical presentations M Hornig1,2, CG Gottschalk3, ML Eddy1, X Che1, JE Ukaigwe1, DL Peterson3 and WI Lipkin. Translational Psychiatry (2017) 7, e1080; doi:10.1038/tp.2017.44; published online 4 April 2017

Read the full article for more info about the atypical subset and the next steps for the researchers.

…Subsets are common in neurological diseases.

Nor is this study’s general finding – that atypical patients can be differentiated from typical patients in ME/CFS – unusual in the neuroscience field.  Virtually every neurological disease… appears to be studded with subsets. Different types of multiple sclerosis, for instance, have been identified using similar kinds of spinal fluid analyses.

Participate in Simmaron Research’s poll, at the foot of the article: Do You Have Typical Or Atypical ME/CFS?

See also: Scientists discover biological evidence of 2 subgroups in ME/CFS

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Welsh health watchdog monitors websites selling medicine

BBC news Wales article, 6 April 2017: Websites selling medicine looked at by health watchdog

Two websites selling prescription medicines are having their registrations looked at by the Welsh health watchdog, the BBC has learned.

Gender GP, an online transgender clinic, and My Web Doctor have applied for registration with Healthcare Inspectorate Wales (HIW).

They are run by Abergavenny-based NHS GP Dr Helen Webberley.

The Welsh Government said all private clinics with a base in Wales must be registered.

HIW said it could not comment on any ongoing cases involving unregistered providers.

A number of websites selling prescription medicines have been reprimanded by the health watchdog in England – the Care Quality Commission (CQC) – after potentially putting patients at risk of harm.

One company has been suspended and another two have had conditions imposed on their registration.

Last month the CQC issued the first clear guidance on the standards it expects from websites selling prescription medications online.

One company, Doctor Matt Ltd, had its registration suspended for six months when the regulator found medications were being prescribed after a patient’s application was assessed in only 17 seconds.

The Royal Pharmaceutical Society has warned that regulators outside England need to adopt the same guidelines for inspection to make sure patients are not being put at risk.

Read more

WAMES recommends that you check out an online pharmacy carefully before use, to ensure you are getting a safe service.

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Review of acupuncture & moxibustion as treatments for CFS

Review abstract:

Acupuncture and moxibustion for chronic fatigue syndrome in traditional Chinese medicine: a systematic review and meta-analysis, by Taiwu Wang, Cong Xu, Keli Pan and Hongyan Xiong in BMC Complementary and Alternative Medicine (open access) 2017 17:163  [Published online 23 March 2017]

BACKGROUND:
As the etiology of chronic fatigue syndrome (CFS) is unclear and the treatment is still a big issue. There exists a wide range of literature about acupuncture and moxibustion (AM) for CFS in traditional Chinese medicine (TCM). But there are certain doubts as well in the effectiveness of its treatment due to the lack of a comprehensive and evidence-based medical proof to dispel the misgivings.

Current study evaluated systematically the effectiveness of acupuncture and moxibustion treatments on CFS, and clarified the difference among them and Chinese herbal medicine, western medicine and sham-acupuncture.

METHODS:

We comprehensively reviewed literature including PubMed, EMBASE, Cochrane library, CBM (Chinese Biomedical Literature Database) and CNKI (China National Knowledge Infrastructure) up to May 2016, for RCT clinical research on CFS treated by acupuncture and moxibustion. Traditional direct meta-analysis was adopted to analyze the difference between AM and other treatments. Analysis was performed based on the treatment in experiment and control groups. Network meta-analysis was adopted to make comprehensive comparisons between any two kinds of treatments. The primary outcome was total effective rate, while relative risks (RR) and 95% confidence intervals (CI) were used as the final pooled statistics.

RESULTS:

A total of 31 randomized controlled trials (RCTs) were enrolled in analyses. In traditional direct meta-analysis, we found that in comparison to Chinese herbal medicine, CbAM (combined acupuncture and moxibustion, which meant two or more types of acupuncture and moxibustion were adopted) had a higher total effective rate (RR (95% CI), 1.17 (1.09 ~ 1.25)).

Compared with Chinese herbal medicine, western medicine and sham-acupuncture, SAM (single acupuncture or single moxibustion) had a higher total effective rate, with RR (95% CI) of 1.22 (1.14 ~ 1.30), 1.51 (1.31–1.74), 5.90 (3.64–9.56). In addition, compared with SAM, CbAM had a higher total effective rate (RR (95% CI), 1.23 (1.12 ~ 1.36)).

In network meta-analyses, similar results were recorded. Subsequently, we ranked all treatments from high to low effective rate and the order was CbAM, SAM, Chinese herbal medicine, western medicine and sham-acupuncture.

CONCLUSIONS

In the treatment of CFS, combined acupuncture and moxibustion (CbAM) and single acupuncture or single moxibustion (SAM) may have better effect than other treatments. However, the included trials have relatively poor quality, hence high quality studies are needed to confirm our finding.

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Exploring the experiences & occupations of men with CFS/ME

Thesis abstract:

Exploring the experiences and occupations of men with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) using a gadamerian interpretive phenomenological framework, by Anne Johnson, 2107 University of the West of England Phd thesis [Online March 31, 2017]

Background:
Chronic fatigue syndrome (CFS) known interchangeably as myalgic encephalomyelitis or encephalomyelopathy (ME) is a contentious and often misunderstood condition of unknown cause. Associated symptoms may fluctuate and include post exertional mental and physical fatigue, sleep disturbance, generalised aches and pains and for some, hypersensitivities to alcohol, light and noise.

The impact of having CFS/ME can result in disruption to all aspects of day to day life for children and adults regardless of ethnicity or socioeconomic factors. In adults, it is estimated that population prevalence is 0.2-0.4% which is higher than in children and that women are affected by the condition more than men by a ratio of 3:1.

The vast majority of the literature linked to living with CFS/ME focuses on the experiences of women with the condition and as a consequence, there is a dearth of literature reporting on the experiences of men. Additionally, men with CFS/ME are considered as difficult to recruit in terms of research participation.

Objective:
The focus of this study was to explore the experiences of men living with CFS/ME and its impact on their day to day lives and occupations.

Design:
A qualitative design was employed underpinned by interpretive phenomenology. Eight men aged between 21 and 68 years old were recruited with a clinically confirmed diagnosis of CFS/ME and interviewed up to four times. Rich data were generated through dialogue, poetry and artworks. Interpretations were made using the hermeneutic work of Gadamer (2004) as a philosophical framework.

Analysis:
Thematic analysis was employed. Unique and shared experiences were identified from the data. Shared findings were synthesised into three themes to reflect the temporally situated nature of the men’s experiences.

Findings:
The findings illustrate that existentialist notions of ‘being-in-the-world’ were significantly disrupted by the presence of CFS/ME. Additionally, the occupational dimension of ‘being-in-the-world’ referred to as ‘doing’ and notions of ‘belonging’ and ‘becoming’ were also disrupted. How CFS/ME impacted upon individual risks to survival and health was also elicited.

Conclusions:
New knowledge was generated to add to the body of work linked to the impact of CFS/ME on the lives and occupations of men with the condition. A unique way of knowing about the meaning of occupation was also gained through fusing philosophical and occupational orientations/frameworks to inform occupational therapy practice and the occupational science literature.

The importance of considering the men’s ‘being-in-the-world’ was emphasised in order to understand their ‘doing’ as a dimension of ‘being’ and their subsequent ‘belonging’ and ‘becoming’. Uniquely, notions of ‘traumatised being’, associated with potentially life threatening causes of fatigue, and ’emasculated being’ were experienced by some of the men and the importance of an awareness of these concepts is addressed in terms of occupational therapists facilitating survival, well-being and ‘harmonious health’ for men with CFS/ME.

[patient stories are contained in chapter 5]

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TV programme highlights Restless Legs Syndrome

Restless legs syndrome is a condition some people with ME and FM experience.

Channel 5 broadcast a programme on 4 April 2017 which is available on My5 until 4 April 2018: Restless Legs Syndrome: Desperate for Help 

NHS Wales Direct article:

Restless legs syndrome, also known as Willis-Ekbom disease, is a common condition of the nervous system that causes an overwhelming, irresistible urge to move the legs.

It can also cause an unpleasant crawling or creeping sensation in the feet, calves and thighs. The sensation is often worse in the evening or at night. Occasionally, the arms are affected too.

Restless legs syndrome is also associated with involuntary jerking of the legs and arms, known as periodic limb movements in sleep (PLMS).

Some people have the symptoms of restless legs syndrome occasionally, while others have them every day. The symptoms can vary from mild to severe. In severe cases, restless legs syndrome can be very distressing and disrupt a person’s daily activities.

Read more

RLS-UK is a charity that supports people living with Restless Legs Syndrome (RLS)

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Scientists discover biological evidence of 2 subgroups in ME/CFS

Medical news today blog post, by Ana Sandoiu, 4 April 2017: Biological basis of ‘atypical’ chronic fatigue syndrome revealed

Extract:

…CFS is difficult to identify as there is no test for it, and because it shares some of its symptoms with other illnesses. However, new research investigates the biological basis for the illness and identifies two subgroups of CFS that go on to develop differently: the so-called classical CFS and an “atypical” variant.

The study was carried out by researchers at the Center for Infection and Immunity (CII) at Columbia University’s Mailman School of Public Health in New York, and it was led by Dr. Mady Hornig, director of translational research at CII and associate professor of epidemiology at the university. The results were published in the journal Translational Psychiatry.

Those with atypical CFS found to have lower levels of immune molecules

Hornig and team performed immunoassays to measure 51 immune biomarkers in the cerebrospinal fluid of 32 people with classical CFS, and another 27 with atypical CFS.

The tests showed lower levels of immune molecules in those with atypical CFS than in those with the classical variant. The analyses revealed drastically lower levels of interleukin 7 (a protein that plays a key role in the adaptive immune response to infections), interleukin 17A, and chemokine ligand 9 (molecules with a key role in the adaptive immunity to neurological illnesses).

Additionally, these biological features were accompanied by different trajectories of disease history and comorbidities. Those with atypical CFS tended to have a history of viral encephalitis and tended to fall ill after traveling abroad or receiving a blood transfusion.

Furthermore, people with atypical CFS went on to develop simultaneous conditions such as seizure disorders, several types of cancers, or demyelinating disorders – that is, multiple sclerosis-like diseases that damage myelin, the protective sheath around the nerve cells in our brains and spinal cords.

“We now have biological evidence that the triggers for ME/CFS may involve distinct pathways to disease, or, in some cases, predispose individuals to the later development of serious comorbidities.

Importantly, our results suggest that these early biomarker profiles may be detectable soon after diagnosis of ME/CFS, laying a foundation for better understanding of and treatments for this complex and poorly understood illness.”    Dr. Mady Hornig

Read the full article with comment by Dr Ian Lipkin

Immune network analysis of cerebrospinal fluid in myalgic encephalomyelitis/chronic fatigue syndrome with atypical and classical presentations, by Hornig, C G Gottschalk, M L Eddy, X Che, J E Ukaigwe, D L Peterson and W I Lipkin in Translational Psychiatry: (2017) 7 [Published online 4 April 2017]

Columbia University blog post, 4 April 2017: Scientists Discover Biological Evidence of “Atypical” Chronic Fatigue Syndrome   Defining subgroups may help clinicians identify and treat the complex, debilitating disease also known as myalgic encephalomyelitis or ME/CFS

 

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US top science journal asserts shift in attitude towards ME/CFS has occurred

Simmaron Research blog post, by Cort Johnson, 31 March 2017: The Shift: Top Science Journal Asserts Shift in Attitude Towards ME/CFS Has Occurred,

“Chronic Fatigue Syndrome is a biological disease” Dr. Ian Lipkin’s Center for Infection and Immunity at Columbia University

From NIH Director Francis Collins’ high profile blog “Moving Toward Answers in ME/CFS“, to the New York Times Opinion piece “Getting It Wrong on Chronic Fatigue Syndrome” exposing the failures of the PACE trial, to the coverage of the Australians’ search for a biomarker, the chronic fatigue syndrome (ME/CFS) community has been treated to some excellent press lately.

Influential journal suggests a shift is occurring in how researchers are viewing ME/CFS
Now comes a piece “Biological underpinnings of chronic fatigue syndrome begin to emerge” from the news section of Nature, one of the world’s most read and most prestigious scientific journals. The article, written by Amy Maxmen, proclaims that a “shift” from viewing ME/CFS as psychosomatic to viewing it as a real disorder has occurred.

The article is a far cry from some of sentiments of the “Life After XMRV” piece Nature did in 2011 in which Simon Wessely asserted that the patients’ reactions to that finding would lead another generation of researchers to avoid ME/CFS research.  (He rather memorably suggested that researchers would rather “work on images of Mohammed” than study it.) Even advocates for the disease, though, worried that the controversy would turn off researchers.  Others, however, felt that the XMRV finding would galvanize researchers to use new technologies to understand ME/CFS.

They were right. Wessely, it appears, was wrong.

World-Class Researchers Beginning to Take ME/CFS On
The Nature article makes it clear that a major cause for the shift occurring is the presence, for the first time ever, of world-class researchers willing to take ME/CFS on.

Dr. Ian Lipkin, an immunologist with an unmatched resume, has not only lent his name and prestige to this disease, but his Columbia team’s published findings  – two of which have outlined dramatic changes in immune functioning in ME/CFS –  have been at the center of this shift. The Columbia team’s findings have been built on collaborations with expert clinicians, including Dr. Daniel Peterson and the Simmaron Research Foundation he advises. (Check out the slideshow that dominates the website for Lipkin’s Center for Infection and Immunity (CII): one of the slides simply says, “Chronic Fatigue Syndrome is a biological disease”.)

Ron Davis, with his many awards and the stunning story of his son’s illness, is also reaching deep into the scientific world to find answers. The stunning picture of Davis holding the printed circuit he’s using to decipher ME/CFS could be a metaphor for the search for the answer to ME/CFS itself.  The answer is there in that maze somewhere, and it’s going to be technology – probably new technology – that uncovers it.

These two men, with their willingness to publicly take bold stands for this disease, have been at the forefront of the “shift” that appears to be occurring. Both men have had the ear of the NIH Director, Francis Collin.  Their credibility has gone far in helping the National Institutes of Health, the largest funder of biomedical research in the country, take a reinvigorated approach to ME/CFS.

Next, Nature cites the conclusion from the IOM report’s “expert panel” that  chronic fatigue syndrome is an under-studied physiological illness. Then comes mention of the intramural study led by Avindra Nath, the widely published and respected clinical director for the National Institute of Neurological Disorders (NINDS). An infectious neurologist, Dr. Nath is conducting the first intramural study in ME/CFS in decades at the National Institutes of Health Clinical Center. Dr. Lipkin and Dr. Peterson are advisers on this intramural study.

Others could have been mentioned: Mark Davis of Stanford, Derya Unutmaz of the Jackson Laboratory, Lasker Award winner Michael Houghton of the University of Alberta, Patrick McGowan of the University of Toronto and others new to the field.  As the names line up, you do get the idea that, as Dr. Nath told Nature, “Researchers are thinking deeply about how to build the field.”

Building the field, of course, is what the NIH’s recent decision to fund three ME/CFS research centers is all about. Yes, much more is needed, but this article, showing up in a highly cited journal, suggests that the tide may be slowing turning where it needs to turn the most – in the research community.

Ian Lipkin and the Center for Infection and Immunity Step Forward

Ian Lipkin is featured twice in the article, first stating:

“We now have a great deal of evidence to support that this is not only real, but a complex set of disorders. We are gathering clues that will lead to controlled clinical trials.”

Three studies from Lipkin and Hornig at Columbia are expected to be published shortly with one to be published next week. Don’t be surprised if, based on Lipkin’s comments, the CII lays the groundwork for something the chronic fatigue syndrome (ME/CFS) community has been waiting for a long time: evidence of biologically determined subsets, or in Lipkin’s words, direct evidence that ME/CFS is made up of a “complex set of disorders”.

The Simmaron Research Institute / Center For Infection and Immunity Collaboration

In its efforts to scientifically redefine ME/CFS, the Simmaron Research Foundation regularly partners with Dr. Lipkin’s Center for Infection and Immunity. Recent efforts included the spinal fluid study which showed dramatic alterations in immune functioning in the brain, the immune study which differentiated short from long duration ME/CFS patients, and the gut study about to be published. Simmaron is currently collaborating with the CII on additional phases of spinal fluid research and more.

Ian Lipkin: Three to Five Years* to Solve Chronic Fatigue Syndrome (ME/CFS)
Simmaron’s Spinal Fluid Study Finds Dramatic Differences in Chronic Fatigue Syndrome
Major Study Suggests Early Immune Activation May Drive Chronic Fatigue Syndrome

Stay tuned for a Simmaron/CII study that will help to reshape our understanding of what ME/CFS is and how it should be treated.

The Gut and ME/CFS

The gut with its immense effect on the immune system is proving to be a fertile area of research on ME/CFS (see below). Perhaps no other team has pushed the ME/CFS gut connection more effectively recently than Ian Lipkin and Mady Hornig at the CII.

The Nature piece tantalized us a bit with news from Ian Lipkin that one of those studies showing an unusual pattern of gut flora in people with ME/CFS and IBS will be published soon.

A quick look at what studies have told us (see below) about the gut and chronic fatigue syndrome (ME/CFS) suggests that reduced gut floral diversity, possibly characterized by increased numbers of inflammatory bacteria may be common in ME/CFS.

Importantly, every study that has looked for leaky gut – which involves the translocation of gut bacteria into the blood – where it could spark an immune response causing fatigue, pain and other symptoms – has found it.  Most intriguingly, the research suggesting that exercise may negatively affect ME/CFS patients’ gut flora and increase their leaky gut issues could help explain post-exertional malaise.

The Gut and ME/CFS – Recent Findings

  • Exercise in ME/CFS produces changes in gut flora, leaky gut and Inflammation  – Shukla’s 2015 study suggests that exercise not only changes the composition of the gut flora in people with ME/CFS but results in increased levels of gut bacteria leaking into the blood (possibly causing inflammation and post-exertional malaise.) The fun didn’t stop there. The ME/CFS patients also had more trouble clearing the gut bacteria from their blood than the healthy controls.
  • People with ME/CFS have reduced gut flora diversity and leaky gut – Gilotreaux’s 2016 study suggests more pro-inflammatory and fewer anti-inflammatory gut species are present in ME/CFS, and provides more evidence of bacteria sneaking through the gut lining and ending up in the blood.
  • Gut bacteria/viruses are infectious triggers in ME/CFS – Navaneetharaja’s 2016 review paper suggests that gut bacteria and/or viruses have been overlooked in the search for an infectious trigger in ME/CFS.
  • ME/CFS is associated with reduced gut microbiome diversity and increased gut viral activity – Gilotreaux’s 2016 case report of twins found reduced VO2 max, decreased gut bacterial diversity and increased gut viral activity in the sick ME/CFS twin.
  • Antibiotics can improve gut flora and sleep in some ME/CFS patients – Jackson’s 2015 Australian study suggests that erythromycin improved the gut flora and sleep in about a third of ME/CFS patients but not in the rest.
  • Altered gut flora diversity – Fremont’s 2013 study shows increased abundance of the same bacterial family (Firmicuties) in ME/CFS as found in Shukla’s 2015 study.
  • Leaky gut is associated with an autoimmune process – Maes 2013 study suggests that increased bacterial translocation (leaky gut) is associated with high levels of antibodies targeting serotonin. Patients with these antibodies had evidence of increased inflammation.
  • Leaky gut is associated with inflammation and symptom severity – Maes 2012 study suggests ME/CFS patients are mounting a very strong immune response to intestinal bacteria found in the blood that is leading to increased inflammation.
  • IBS/leaky gut subset is present in ME/CFS – Maes 2012 study shows one subset of ME/CFS patients (60%) has leaky gut and IBS while another subset does not.
  • Treating leaky gut in ME/CFS can reduce symptoms – Maes 2008 study shows that treating leaky gut with natural anti-inflammatory and anti-oxidative substances (NAIOSs), such as glutamine, N-acetyl cysteine and zinc in conjunction with a leaky gut diet can significantly improve symptoms in ME/CFS
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New book: Science, Politics, …….and ME: a health scandal in our generation

CreateSpace.com book publication announcement, 5 March 2017: Science, Politics, …and ME A health scandal in our generation, by Dr Ian Gibson & Elaine Sherriffs

Few diseases can have been so maligned by false information, so manipulated by an insidious establishment-controlled ideology, or so poorly dealt with by those holding the purse-strings for research into the disease, than Myalgic Encephalomyelitis (ME).

This book examines a scandal in our generation – a scandal still being played out by corrupt, apathetic, inept or ignorant attitudes in governments and Medical Research Councils and health services.

One of the authors (Dr Ian Gibson) in his ‘ Retirement’ has written this book with a political friend (Elaine Sherriffs). Ian Gibson has a passing interest in the current political scene across the world and regularly speaks on these issues. When it comes to universal health, he has pointed out on many occasions that governments often ignore scientific evidence.

ME, as described in the book, is a major problem where evidence is relegated to psychiatric explanations. It is a desperate need for scientists as far as health issues are concerned to look for biomedical evidence and ME is a major example.

This book describes the political manoeuvring which features just like those in the TV programme The House of Cards in the USA & the UK which described the games that are played in both parliaments. He has previously addressed these problems in an early book in 1981 – called  ‘Class, Health & Profit’.

Ian and Elaine have penetrated the murky world of politics which features in the world of ME. It is long past the time to treat this as a serious illness and the need for serious biomedical research. This will only come about when politicians and the media stop trivialising the illness.

Science, Politics …… and ME is a book which will serve as a reference for the dark times, when patients were ill-served by the clash of interests between truths and untruths. It is also a book which comes at a time where a brighter future may be in the making for people with ME and their families.

Publication Date: March 05 2017
ISBN/EAN13: 1543183786/9781543183788
Paperback

£7.99 from Amazon

 

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Adults’ experiences of the illness trajectory in post-infectious fatigue syndrome in Norway

Research abstract:

From good health to illness with post-infectious fatigue syndrome: a qualitative study of adults’ experiences of the illness trajectory, by Eva Stormorken, Leonard A. Jason and  Marit Kirkevold in BMC Family Practice 2017 18:49  [PNorwayublished: 27 March 2017]

Background:
Municipal drinking water contaminated with the parasite Giardia lamblia in Bergen, Norway, in 2004 caused an outbreak of gastrointestinal infection in 2500 people, according to the Norwegian Prescription Database. In the aftermath a minor group subsequently developed post-infectious fatigue syndrome (PIFS). Persons in this minor group had laboratory-confirmed parasites in their stool samples, and their enteritis had been cured by one or more courses of antibiotic treatment. The study’s purpose was to explore how the affected persons experienced the illness trajectory and various PIFS disabilities.

Methods:
A qualitative design with in-depth interviews was used to obtain first-hand experiences of PIFS. To get an overall understanding of their perceived illness trajectory, the participants were asked to retrospectively rate their functional level at different points in time. A maximum variation sample of adults diagnosed with PIFS according to the international 1994 criteria was recruited from a cohort of persons diagnosed with PIFS at a tertiary Neurology Outpatient Clinic in Western Norway. The sample comprised 19 women and seven men (mean age 41 years, range 26–59). The interviews were fully transcribed and subjected to a qualitative content analysis.

Results:
All participants had been living healthy lives pre-illness. The time to develop PIFS varied. Multiple disabilities in the physical, cognitive, emotional, neurological, sleep and intolerance domains were described. Everyone more or less dropped out from studies or work, and a few needed to be taken care of during the worst period. The severity of these disabilities varied among the participants and during the illness phases.

Despite individual variations, an overall pattern of illness trajectory emerged. Five phases were identified: prodromal, downward, turning, upward and chronic phase. All reached a nadir followed by varying degrees of improvement in their functional ability. None regained pre-illness health or personal and professional abilities.

Conclusions:
The needs of persons with this condition are not met. Early diagnosis and interdisciplinary rehabilitation could be beneficial in altering the downward trajectory at an earlier stage, avoiding the most severe disability and optimising improvement. Enhanced knowledge among health professionals, tailored treatment, rest as needed, financial support and practical help would likely improve prognosis.

Comment from ME Research UK: Experiences of post-infectious fatigue syndrome

 

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