The art & science of ME/CFS: a 2016 synopsis by Dr Daniel L. Peterson

Posted on 10/12/2016 by wames

Article abstract:

ME/CFS, a complex multisystem disease of diverse etiology, which results in significant functional and costly impairment, is estimated to affect approximately 40,000 Swedish residents.

This synopsis describes developments by governmental agencies (i.e. the CDC); emerging clinical centers in Stockholm and Gothenburg, and the sophisticated Swedish research addressing basic and translational medicine, and physician education.

A model is presented for Centers of Excellence, additional issues addressed: name change controversy, subsetting of patients, Big Data and Precision medicine, the microbiome, and current treatment challenges.

Research obstacles and solutions are outlined including the profound lack of funding and attention afforded by government agencies, academic institutions, and pharmaceutical industry. Development of C.O.E.’s and optimism; based on new science and technology with worldwide collaboration, suggest hope for the future.

The art and science of ME/CFS: a 2016 synopsis, by Dr Daniel L. Peterson in Socialmedicinsk tidskrift Vol 96 no. 4 2016

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Dr Daniel Peterson is a scientific advisor for Simmaron Research

peterson

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A race to produce the first drug for CFS? Dr Jarred Younger talks

Posted on 10/10/2016 by wames

Health rising blog post, by Cort Johnson, 5 October 2016: A Race To Produce the First Drug for Chronic Fatigue Syndrome? Jarred Younger Talks

the-drug

Drug companies interested in ME/CFS? A race to produce the first drug for ME/CFS? A race? Those almost sound like fantasies but that’s the message Jarred Younger brought in his recent video talk.

Are drug companies finally getting interested in ME/CFS?
The bottom line, he said, is that over the last three months he’s met with pharmaceutical companies who’ve realized that the first company to bring an ME/CFS drug to market is going to hit it big. Younger didn’t mention it, but it’s hard to believe that Ampligen’s approval in Argentina hasn’t caused the pharmaceutical industry to wake up a bit.

(One only has to look at Lyrica’s success in fibromyalgia. Lyrica is clearly not a perfect drug; it’s side effects prevent many from using it, but that hasn’t stopped it from becoming a blockbuster drug. In 2014 Lyrica, which is also approved for other conditions, was Pfizer’s top-selling drug and the top selling central nervous system drug period.)

When asked which mechanisms drug companies might be targeting Younger suggested two major themes: neuroinflammation and metabolism. Right now they’re in the information gathering and small pilot study phase. That’s obviously no guarantee that a drug will be developed, but it’s a big step forward for a disease that has never, except for Hemispherx Biopharma, received any pharmaceutical company interest.

Because any new drug has to go through animal and then human trials, a new drug for ME/CFS is years away. A quicker route companies are exploring, Younger said, is drug repurposing: using drugs that are FDA approved for other conditions than ME/CFS.

In its Biovista repurposing project, The Solve ME/CFS Initiative (then the CFIDS Association of America) uncovered a low dose naltrexone / Trazodone drug combination that might work. That idea never got off the ground, but both Ron Davis of the Open Medicine Foundation and Dr. Nancy Klimas of the Institute for Neuro-Immune Studies at Nova Southeastern University believe drug repurposing has to come first, and both are pursuing it.

Low Dose Naltrexone Drug Combination Proposed for Chronic Fatigue Syndrome (ME/CFS) 
Davis has samples of every known FDA approved drug in his tool kit. If he can determine which pathways are broken he can start doing preliminary lab studies to determine which drugs might work.

The movement forward validates what advocates have been saying for years: that the first drug approved for ME/CFS is going to reset the table, and that a strong research foundation is needed to produce that drug. Pharmaceutical companies, after all, target biological abnormalities and that requires biological research. In the absence of that “in” provided by biological research, treatment studies in ME/CFS will be dominated by approaches that require no biological foundation – such as CBT.

If Ron Davis can target common pathways he can starting testing drugs in his lab
Of course, we don’t have that strong research foundation yet, but it appears that we have enough of it that pharmaceutical companies are beginning to show interest.

The NIH, hopefully, is either tuned into some of these developments or is listening, because if Younger is right, this field could be on the cusp of an important breakthrough. A timely influx of funds could do wonders.

It wasn’t just drug companies. Younger also reported a new found interest from research labs. (Later, he talked about two clinical researchers who have asked to join his lab).

Read more about treatment studies

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NHS Continuing heathcare – deadline approaching for claiming costs

Posted on 10/07/2016 by wames

Welsh Government News post, 29 September 2016: Deadline approaching for people to claim for their care

People who believe their care should have been funded by the NHS, are being encouraged by the Welsh Government to register their intent to make a claim.

Continuing NHS Healthcare is a package of care provided free-of-charge by the NHS for those people with complex and primarily health-based needs. This can be provided in a care home or an individual’s own home.

People who think they, or someone they care for, may have been eligible for Continuing NHS Healthcare but paid for all, or part, of their care can submit a claim.

Potential claimants have until October 31st to register their intent to make a claim for continuing healthcare costs which were incurred between 1 October 2014 and 30 October 2015.

The NHS will provide advice to claimants and will complete all of the work required to review their case free of charge. This is not a legal process and there is no requirement for people to appoint a solicitor. However, if a solicitor is used, these costs cannot be reimbursed.

All claims will be reviewed within 6 months of the NHS having all the information that it needs. A publicity campaign to promote the cut-off date, together with information about where people can get further advice is also being launched.

Minister for Social Services and Public Health, Rebecca Evans, said:

“People with an illness or disability can sometimes need long-term care to help them, and their families, manage. Some people will have paid for that care themselves, when it should have been provided free by the NHS.

“If people, or their families, believe they meet the criteria for having their care paid for through Continuing NHS Healthcare, but they paid for the care themselves, I encourage them to come forward to make a claim.

“Health boards will provide free advice to anybody looking to make a claim and will also complete the necessary paper work on their behalf.”

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MEGA ‘big data’ study Q&A

Posted on 10/06/2016 by wames

Change.org petition update: MEGA Questions and Answers, by M.E./CFS Epidemiology and Genomics Alliance (MEGA), 5 October 2016

mega-image

Many of you have asked us questions about MEGA. We have not yet applied for funding and the patient advisory groups have not yet met to provide advice. So these are our preliminary thoughts at the moment. Some of this will change as we work on the first application (see below) and during consultations prior to future applications. We want to engage with as many people as possible especially in the current planning phase.

Has the study been funded yet?

No. We are planning to apply for funding in 2017 for the first stage of the study, setting up the world’s largest Bioresource of data and samples from CFS/ME patients. Our aim is to create a resource that all researchers all over the world can use. We will then apply for further funding for the subsequent omics-based stages of our study – searching for the biological basis to ME/CFS – once the Bioresource is set up.

Will the data be open access?

Yes. Subject to individuals’ consent, the data and the samples will be available for researchers to use. We want to rapidly increase effective research (by us, by anyone) to understand the biology, causes and different types of CFS/ME.

What case definition will you use?
To do the genetic studies that we want to do, we think we need to recruit at least 10 thousand adults and 2 thousand children. The only way to do this is to recruit patients through NHS clinics throughout England. England is the only place in the world that can collect this large number of patients in a short time frame.

Patients with CFS/ME will be identified by clinicians in the NHS clinics. The clinicians will be asked to identify patients they judge from NICE criteria to have CFS/ME. This means patients with other causes of fatigue will not be recruited including (for example): those with thyroid disease, diabetes or depression that is sufficiently severe to explain their fatigue. Patients will have been examined, a full history taken and they will have had screening blood tests (to ensure other causes of fatigue have been excluded).

We will collect sufficient information on each patient to be able to say whether they have CFS/ME using other research diagnoses (for example, the CDC [Fukuda 1994] diagnostic criteria, the IACFS criteria, Canadian criteria and so on). This is in addition to the diagnoses of CFS/ME that patients will get following NICE guidance. We will listen to our patient advisory group in terms of how much data we can collect on different diagnostic criteria. Our patients advisory groups may recommend collecting less data as patients are so ill.

Why use broad criteria?

As the symptoms and genetics of CFS/ME are highly heterogeneous we think it makes sense to build a Biobank of samples from all people diagnosed with CFS/ME (diagnosed with NICE criteria, without other causes of fatigue, as above). This is because our experience from other diseases is that the genetics found for one set of people with CFS/ME will be relevant to the genetics found for another, and even to the genetics of the population at large. But afterwards, in the computer, we will separate out various subsets of people with CFS/ME according to different diagnostic criteria. This will tell us which diagnostic criteria are more effective for which people.

Why are psychiatrists involved?

The MEGA consortium has brought together many experts from a wide range of different disciplines from across genetics, genomics, metabolomics, pain research, proteomics, psychiatry, sleep research and transcriptomics. Psychiatry needs to be there to complete the big picture yet it is just one minor aspect. MEGA will always be a Big Data ‘omics study, and will never be a psychiatric study.

What data will you collect?

We will collect symptom data on all patients to allow us to identify which patients will be identified as having CFS/ME using different diagnoses. We will also include data on fatigue, disability, anxiety and depression. We would like to collect detailed data on pain. How much data we collect will depend on what our patient advisory group says will be acceptable to consenting patients and how much funding we get.

Will you be doing additional tests?

We would like to do additional, more time-consuming and expensive tests on a sample of patients that will help us more finely phenotype (describe CFS/ME more carefully) those recruited into the study. We don’t think we will have the money to do this for everybody or for everything. We would like to do additional studies to collect more data on pain, exercise-induced stress and sleep studies and possibly some imaging. We also want to be as sure as we can that we have carefully excluded other diagnoses such as depression and anxiety as a cause of fatigue. We haven’t worked on the details for this but will be asking our patient advisory group about what they think would be feasible and acceptable given the funding limits.

What samples will you be taking?

We will take blood and urine samples that allow us to look at the genetics, the epigenetics (how genes are modified chemically), transcriptomics (identifying which genes are turned on and which are turned off), proteomics (the proteins in the blood), and the metabolomics (what small molecules are made by our enzymes and other proteins). We will use standard procedures for collection of these samples developed previously for many other studies.

Please explain why different members are part of the MEGA team?

We will upload a list of biographies and what members have to contribute in the next few days.

Sign the petition to support this study

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Brain scan shows altered connectivity between different regions of the brain in CFS

Posted on 10/06/2016 by wames

Research abstract:

Studies using arterial spin labelling (ASL) have shown that individuals with chronic fatigue syndrome (CFS) have decreased regional cerebral blood flow, which may be associated with changes in functional neural networks. Indeed, recent studies indicate disruptions in functional connectivity (FC) at rest in chronically fatigued patients including perturbations in static FC (sFC), that is average FC at rest between several brain regions subserving neurocognitive, motor and affect-related networks.

Whereas sFC often provides information of functional network reorganization in chronic illnesses, investigations of temporal changes in functional connectivity between multiple brain areas may shed light on the dynamic characteristics of brain network activation associated with such maladies.

We used ASL fMRI in 19 patients with CFS and 15 healthy controls (HC) to examine both static and dynamic changes in FC among several a priori selected brain regions during a fatiguing cognitive task. HC showed greater increases than CFS in static FC (sFC) between insula and temporo-occipital structures and between precuneus and thalamus/striatum.

Furthermore, inferior frontal gyrus connectivity to cerebellum, occipital and temporal structures declined in HC but increased in CFS. Patients also showed lower dynamic FC (dFC) between hippocampus and right superior parietal lobule. Both sFC and dFC correlated with task-related fatigue increases.

These data provide the first evidence that perturbations in static and dynamic FC may underlie chronically fatigued patients’ report of task-induced fatigue. Further research will determine whether such changes in sFC and dFC are also characteristic for other fatigued individuals, including patients with chronic pain, cancer and multiple sclerosis.

Static and dynamic functional connectivity in patients with chronic fatigue syndrome: use of arterial spin labelling fMRI, by Boissoneault J, Letzen J, Lai S, Robinson ME, Staud R. in Clin Physiol Funct Imaging. 2016 Sep 28 [Epub ahead of print]

 

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Prof Peter White says: If my team’s research on ME is rejected, the patients will suffer

Posted on 10/03/2016 by wames

Guardian opinion piece, by Peter White, 20 September 2016: ‘If my team’s research on ME is rejected, the patients will suffer’

Sufferers of chronic fatigue syndrome have been neglected too long. But our Pace trials show the right talking and exercise therapies can make a real difference

Chronic fatigue syndrome – sometimes called ME (myalgic encephalomyelitis) – is a sad tale for everyone involved. It is a debilitating illness that affects about 250,000 children and adults in the UK alone, wrecking lives as people are unable to hold down a job and are sometimes left bed-bound for years on end.

Unfortunately these patients have not been treated well – their illness is often dismissed or belittled, leading to much anger, misinformation and argument. There are claims of foul play, with issues over freedom of information and sharing of trial data; this week it was claimed that sexism is part of the reason those with ME struggle to get the proper treatment. My colleagues, Professors Trudie Chalder and Michael Sharpe, and I have spent our careers trying to improve care for patients with CFS/ME. At the heart of this story is the Pace trial we have been conducting since 2005.

For many years Nice (the National Institute for Health and Care Excellence, which oversees healthcare evidence) recommended just two treatments – graded exercise therapy (GET) and cognitive behavioural therapy (CBT) – because it had the best evidence that these therapies worked. However, many patients were not using them, following instead a self-guided treatment called “pacing”: listening to the messages from their bodies and pacing themselves – trying not to do too much, wary of pushing themselves to a point where they might make the illness worse. The idea of doing exercise therapy was scary for some patients, worried that over-exertion would exacerbate their ill-health. The idea that CBT, a talking treatment, might help, raised fears that the illness was regarded as “merely psychological”, or even “all in the mind”.

With so much uncertainty and fear among patients, we wanted to find out which of these treatments worked best and whether they were safe. So we ran a large trial with 640 patients that would seek to replicate earlier studies, but on a much bigger scale. All those who took part were given specialist care and randomly allocated to also receive either pacing therapy, CBT, GET, or nothing extra. We had involvement from CFS/ME community, and the research was overseen by independent committees looking at data, safety and how the trial was run.

The results of our study, published in The Lancet in 2011, were clear – those patients given CBT or GET experienced significantly greater improvements in both symptoms and ability to do things, compared with either pacing therapy or specialist medical care alone. Not only were CBT and GET more effective: crucially, they were just as safe as the other treatments when done correctly.

Our results confirmed the earlier smaller trials, and strengthened the evidence upon which the recommendations of Nice were based. Added to this, a recent Cochrane review (a summary of all the evidence, and considered the gold standard in medical research) also concluded that exercise is a safe and effective treatment. In short, CBT and GET are safe, can definitely help some people and are more effective than other treatments: but, as with all treatments in medicine, they cannot help everyone.

From here on this should have become a happier story. However, some of the ensuing newspaper headlines – such as “Got ME? Just get out and exercise, say scientists” – gave the misleading impression that patients just needed to pull themselves together, or even that they were making it all up. In our clinics we had seen far too much suffering to ever think this illness could be dismissed in this way.

Our research, and that of our colleagues in this field, has attracted its fair share of criticism. Some campaigners have even called for the research to be stopped, the findings retracted, and CBT and GET abandoned completely as they cause harm. One recent focus of criticism has been whether CBT and GET can actually bring about recovery or remission from the illness, not just reduce the symptoms. And by recovery we mean recovery from a patient’s present episode of illness – which is not necessarily the same as being cured, as someone might fall ill again.

To address this we did another test on the data, and found that 22% of people could be considered as recovered with either CBT or GET. Though not a large proportion it was about three times more than the recovery rates achieved by the other two treatments. Other studies showed similar proportions recovering after CBT.

In the latest step in this saga, a blog that hasn’t gone through the rigours of scientific peer-review, or being published in a journal claims that CBT and GET are not as effective as we reported. The authors got their figures by tweaks such as increasing the pass-grade for what counted as recovery, and excluding patients who had reported themselves as “much better”.

Whichever way the data is viewed, patients get better results from CBT and GET – both confirmed as safe – than they do from pacing or medical care alone.

This whole affair is perhaps saddest for the patients themselves, whose suffering has been neglected for far too long. However, there is hope. First, the important message for patients is that it is possible to get treatment that will help them improve and for some to recover. Second, we agree with campaigners that we need more research into the causes and treatments of CFS/ME. However, if their campaign puts people off trying CBT and GET, it will be the patients themselves who will suffer the most.

This post is followed by 156 comments (by 9am 3 Oct 2016). This is the first:

Unfortunately, this is a totally misleading analysis of the situation. Independent scientists are now more or less unanimous that the PACE trial is worthless because of basic design flaws. The recent reanalysis by an independent group was based on the PACE authors’ original endpoints and it shows no significant evidence for recovery due to specific therapies. The independent review in the recent Freedom of Information tribunal confirmed that the PACE authors’ claims that criticism of their trial was an attack on science were groundless. I have become involved in this as an independent outside academic and I am very clear that the criticism are entirely justified and often too lenient.

Jonathan Edwards
Professor Emeritus
Department of Medicine University College London

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Distinctive personality profiles of FM & CFS patients

Posted on 10/01/2016 by wames

Research abstract:

OBJECTIVE

The current study is an innovative exploratory investigation, aiming at identifying differences in personality profiles within Fibromyalgia Syndrome (FMS) and Chronic Fatigue Syndrome (CFS) patients.

METHOD

In total, 344 participants (309 female, 35 male) reported suffering from FMS and/or CFS and consented to participate in the study. Participants were recruited at an Israeli FM/CFS patient meeting held in May 2013, and through an announcement posted on several social networks. Participants were asked to complete a research questionnaire, which included FMS criteria and severity scales, and measures of personality, emotional functioning, positivity, social support and subjective assessment of general health. In total, 204 participants completed the research questionnaire (40.7% attrition rate).

RESULTS

A cluster analysis produced two distinct clusters, which differed significantly on psychological variables, but did not differ on demographic variables or illness severity. As compared to cluster number 2 (N = 107), participants classified into cluster number 1 (N = 97) showed a less adaptive pattern, with higher levels of Harm Avoidance and Alexithymia; higher prevalence of Type D personality; and lower levels of Persistence (PS), Reward dependence (RD), Cooperation, Self-directedness (SD), social support and positivity.

CONCLUSION

The significant pattern of results indicates at least two distinct personality profiles of FM and CFS patients. Findings from this research may help improve the evaluation and treatment of FM and CFS patients, based on each patient’s unique needs, psychological resources and weaknesses, as proposed by the current trend of personalized medicine.

Distinctive personality profiles of fibromyalgia and chronic fatigue syndrome patients, by Ablin JN, Zohar AH, Zaraya-Blum R, Buskila D. in PeerJ. 2016 Sep 13

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Mitochondrial proteins as possible biomarkers for subgroups of CFS

Posted on 09/30/2016 by wames

Research abstract:

Chronic fatigue syndrome (CFS) is a debilitating and complex disorder characterized by unexplained fatigue not improved by rest. An area of investigation is the likely connection of CFS with defective mitochondrial function.

In a previous work, we investigated the proteomic salivary profile in a couple of monozygotic twins discordant for CFS. Following this work, we analyzed mitochondrial proteins in the same couple of twins. Nano-liquid chromatography electrospray ionization
mass spectrometry (nano-LC-MS) was used to study the mitochondria extracted from platelets of the twins.

Subsequently, we selected three proteins that were validated using western blot analysis in a big cohort of subjects (n=45 CFS; n=45 healthy), using whole saliva (WS). The selected proteins were as follows: aconitate hydratase (ACON), ATP synthase subunit beta (ATPB) and malate dehydrogenase (MDHM). Results for ATPB and ACON confirmed their upregulation in CFS. However, the MDHM alteration was not confirmed.

Thereafter, seeing the great variability of clinical features of CFS patients, we decided to analyze the expression of our proteins after splitting patients according to clinical parameters. For each marker, the values were actually higher in the group of patients who had clinical features similar to the ill twin.

In conclusion, these results suggest that our potential markers could be one of the criteria to be taken into account for helping in diagnosis.  Furthermore, the identification of biomarkers present in particular subgroups of CFS patients may help in shedding light upon the complex entity of CFS. Moreover, it could help in developing tailored
treatments.

Bottom-up proteomics suggests an association between differential expression of mitochondrial proteins and chronic fatigue syndrome, by F Ciregia, L Kollipara, L Giusti, RP Zahedi, C Giacomelli, MR Mazzoni, G Giannaccini, P Scarpellini, A Urbani, A Sickmann, A Lucacchini, L Bazzichi in Translational Psychiatry Translational Vol. 6, #9, p e904

Supplementary Information

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Rewriting the script – improving Welsh TV & film industry opportunities for all

Posted on 09/29/2016 by wames

Diverse Cymru announcement: Rewriting the Script

filming

Join Diverse Cymru for engagement events with production companies, casting agencies, education providers, funders, diverse community organisations, and diverse talent to discuss changing working practises in film and TV to reflect the diverse talent in Wales.

Diverse Cymru have been funded by the Welsh Government Creative Industries sector team to carry out research into the barriers to diverse communities in the film and TV industries in Wales and solutions to address these barriers.

Join us one of our regional engagement events to:

  • Hear about what organisations are currently doing to improve diversity in film and TV
  • Hear individuals talk about their experiences working in – or getting into – the film and TV industries
  • Discuss the recommendations and how we can make diversity a reality by working together

We will be holding events at locations across Wales

Cardiff – Tuesday 18th October, 2pm to 5pm – University of South Wales (ATRiuM Building), 86-88 Adam St, Cardiff, CF24 2FN

Colwyn Bay – Thursday 20th October, 1pm to 4:30pm – TAPE Community Music and Film, Berthes Road, Old Colwyn Bay, Conwy, LL29 9SD

Carmarthen –  Friday 21st October, 1pm to 4:30pm – Carmarthenshire Association of Voluntary Services, The Mount Centre, 18 Queen St, Carmarthen, SA31 1JT

Refreshments will be provided. Travel and access costs can be reimbursed if required.

To register for one of the events please email: ele.hicks@diverse.cymru or call Hannah Mason on 029 2036 8888.

Diverse Cymru – promoting equality for all / hyrwyddo cydraddoldeb i bawb

307-315 Cowbridge Road East, Cardiff, CF5 1JD

 

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Exercise and therapy cure for ME is ‘seriously flawed’

Posted on 09/29/2016 by wames

Times article, by Tom Whipple, 28 September 2016: Exercise and therapy cure for ME is ‘seriously flawed’

times-getty-photo

A landmark study suggesting that ME could be treated with exercise and psychological intervention is seriously flawed, scientists have claimed.

If correct, it would mean that treatments recommended on the NHS, which have proved hugely controversial among Britain’s 250,000 sufferers of ME, are ineffective.

However, the study, which, since its publication in the Lancet, has been the focus of bitter dispute, has been defended by its authors and other scientists. The new analysis used the same data but a different definition for what constituted “recovery”. Philip Stark, professor of statistics at Berkeley, argued that this simple change converted a “finding into an unfinding” — showing that there was no benefit from exercise or cognitive behavioural therapy.

He conducted the re-analysis because he said the original authors had weakened the criteria used to judge the severity of symptoms.

“It was lax to the point where an individual who would have been deemed ill on entry could have been considered healthy at the end, even if they had deteriorated,” he said.

His paper is the latest salvo in a clash between the scientists behind the trial and patients, many of whom disagree that their condition can be treated with behavioural interventions. At times the dispute has become so bitter that scientists have complained of death threats.

ME, also known as chronic fatigue syndrome, is a mysterious condition in which people experience severe tiredness, often to the extent that they cannot work. Many mechanisms have been proposed for triggering it. Some have suggested it is a maladaptive reaction to viral infection, others that it is psychological.

While the causes are unknown, the disputed trial claimed that its symptoms could be alleviated with exercise and cognitive behavioural therapy. Some sufferers, who saw headlines such as “Got ME? Just get out and exercise, say scientists”, considered this offensive and have disputed both its methodology and conclusions.

Now, independent scientists say they have a point.

“It’s an unfortunately common practice to change criteria in trials,” said Professor Stark. “The consequence of this is you can’t really interpret if something is meaningful or not.”

Peter White, one of the original researchers, said he did not dispute Professor Stark’s methods, but added that the argument was about the definition of recovery.

“They’ve used more conservative criteria. We thought people who rated their health as ‘much better’ or ‘very much better’ should be included. They used ‘very much better’. We said in the paper one major limitation is it is very difficult to define recovery.”

He was defended by George Lewith, professor of primary care at Southampton University, who was not involved in the original research. He said the field was in danger of becoming politicised.

“I’ve worked in the area for ten years, and I’ve been appalled by what has happened. There’s a small group of people with fixed and opposing views, and they want to torture the data until it proves what they believe. I think there’s a great danger people will stop doing research because it’s so confrontational.”

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