The Mail online asks: Why are doctors and patients still at war over ME?

Posted on 08/15/2017 by wames

Mail online post, by Jerome Burns, 15 August 2017: Why are doctors and patients still at war over M.E.?

How the best treatment for the debilitating condition is one of the most bitterly contested areas in medicine

  • Myalgic encephalomyelitis can leave those affected bedridden for years
  • It’s linked with 60 symptoms, most commonly a feeling of constant exhaustion
  • There’s been a long-running debate between doctors and patients about cause

Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It’s linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — ‘like a dead battery’.

The condition first reached mainstream consciousness in the Eighties following outbreaks in New York and Nevada. By then it was officially known as chronic fatigue syndrome (CFS).

For a time, it seemed everyone knew someone who was affected by it, and it was derisively dubbed ‘yuppie flu’ because it seemed typically to affect young professionals.

For years there’s been a long-running and bitter debate between doctors and patients about its cause and how to treat it.

The lack of a clear physical cause meant many doctors dismissed it as all in the mind. This infuriated patient groups who insisted it was all too real and the result of an infection or immune system failure.

Even now, when it is generally accepted that ME/CFS is a genuine condition, it remains one of the most angrily contested areas of medicine. But the battle lines are no longer drawn just between patients and doctors: the medical community itself is at loggerheads.

The issue: the best way to treat ME. This has huge significance for the estimated 500,000 people in Britain affected by it. The official NHS treatment for their condition is delivered by psychologists and involves a combination of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) which involves doing a little more each day.

The idea is that doing regular aerobic exercise would help patients a lot, but that they are held back by ‘fear’ of activity: the CBT is meant to overcome this.

Many patients and doctors claimed this combination provided little if any benefit.

This dispute has now broken out into the public arena in an extraordinary fashion. Two weeks ago the Journal of Health Psychology published what was effectively an attack on the official NHS treatment.

COULD IT BE CAUSED BY INFLAMMATION?
At the heart of the issue is what causes ME. Patient activists and some doctors consider it a physical disorder.

This ‘biological’ theory appeared to be reinforced by recent research from Stanford University in the U.S. that identified a new set of ‘messenger’ molecules in the blood that are part of the immune system and behave differently in ME/CFS patients.

New, sophisticated equipment allowed a team to run a very detailed analysis of the blood of 192 patients, comparing it with nearly 400 healthy people. They found that immune system messenger molecules (cytokines) that trigger inflammation and produce flu-like symptoms were higher in patients with the most severe symptoms.

An independent expert, Gordon Broderick, a systems biologist at Rochester General Hospital in New York, commented that it was a ‘tremendous step forward’.

Read more

More articles inspired by the publication of an issue of the Journal of Health Psychology’s issue on ME/CFS:

Harsh criticism of big ME-study (Norwegian article with English translation)

The so-called PACE-the study is school example of poor research, writes journal editor. Thus, the fight rolls on ME/chronic fatigue syndrome.

The researchers behind the PACE-the study believes the study shows that training and cognitive therapy can improve or cure ME/CFS. Not all agree in the conclusion.

Looking at the Evidence (blog post by mrspoonseeker)

Chronic fatigue syndrome reality conflicts with medical study (in The Mining Journal)

American physicians have been strongly influenced by the PACE trial. This may be the result of our devotion to the concepts of “Evidence Based Medicine.” One simply has to publish a study, whether well-constructed or not, biased though it may be, perhaps even deeply flawed, and the results can be adopted and repeated as gospel.

The research community, on the other hand, has rejected the psychiatric model epitomized by PACE. They instead are looking for a physiologic explanation, whereby there is some actual, physical phenomenon at work.

 

 

 

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FITNET’s internet-based CBT may impede natural recovery in adolescents with ME/CFS

Posted on 08/14/2017 by wames

Review abstract:

FITNET’s Internet-Based Cognitive Behavioural Therapy is ineffective and may impede natural recovery in adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. A Review, by Simin Ghatineh and Mark Vink in Behav Sci (Basel). 2017 Aug 11;7(3). pii: E52

The Dutch Fatigue In Teenagers on the interNET (FITNET) study claimed that after 6 months, internet based cognitive behaviour therapy in adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), led to a 63% recovery rate compared to 8% after usual care, and that this was maintained at long term follow up (LTFU).

Our reanalysis shows that their post-hoc definition of recovery included the severely ill, the unblinded trial had no adequate control group and it used lax selection criteria as well as outcomes assessed via questionnaires rather than objective outcomes, further contributing to exaggerated recovery figures.

Their decision not to publish the actometer results might suggest that these did not back their recovery claims. Despite these bias creating methodological faults, the trial still found no significant difference in recovery rates (“~60%”) at LTFU, the trial’s primary goal.

This is similar to or worse than the documented 54-94% spontaneous recovery rates within 3-4 years, suggesting that both FITNET and usual care (consisting of cognitive behaviour and graded exercise therapies) are ineffective and might even impede natural recovery in adolescents with ME/CFS. This has implications for the upcoming costly NHS FITNET trial which is a blueprint of the Dutch study, exposing it to similar biases.

Fitnet NHS website

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Is SEID comparable to research case definitions of CFS?

Posted on 08/12/2017 by wames

Two groups of American researchers debate the appropriateness of using case definitions for research purposes.

Article abstract:

Mistaken conclusions about systemic exercise intolerance disease being comparable to research case definitions of CFS: a rebuttal to Chu et al., by Leonard A. Jason, Madison Sunnquist, Kristen Gleason, Pamela Fox in Fatigue: Biomedicine, Health & Behavior
August 7, 2017 [Preprint]

The recent article by Chu et al. contrasted different case definitions that have been used to describe chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME). In particular, their study compared the new Institute of Medicine (IOM) criteria for systemic exertion intolerance disease (SEID) with three other ME and CFS case definitions.

We appreciate these investigators attempting to use and operationalize the new IOM criteria; however, we disagree with their main conclusion that the percentage of patients selected by the IOM criteria is comparable to the percentage selected by other research case definitions. This conclusion could potentially encourage investigators to use the IOM criteria for research purposes.

In this commentary, we discuss our observations of the Chu et al. article with respect to their methodology, illustrating how the conclusions of an investigation can be influenced by the manner in which case definitions are operationalized.

Article abstract:  

Differences of opinion on systemic exercise intolerance disease are not ‘mistakes’: a rejoinder to Jason, Sunnquist, Gleason and Fox, by Lily Chu, Ian J. Valencia, Jose G. Montoya in Fatigue: Biomedicine, Health & Behavior, 10 Aug 2017

Differences of opinion about how case definitions are operationalized should not be characterized as ‘mistaken.’ Despite limitations, our study provides insight into how systemic exertion intolerance disease (SEID) criteria perform early in the course of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) compared to other
case definitions.

To facilitate early, accurate diagnosis, research needs to be performed, ideally, prospectively with subjects who have not been ill for years. In addition, results of past treatment studies may not be applicable to many ME/CFS patients because criteria used for research differed from patients’ clinical presentations. To avoid this potential mismatch between research employing the new clinically-focused SEID criteria should be promoted, rather than discouraged.

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This is why I quit exercise therapy

Posted on 08/11/2017 by wames

Buzzfeed news blog post, by Camilla Maxted, 6 Aug 2017: This is why I quite exercise therapy

When it comes to my illness, I’ve learned to listen to my symptoms, trust my body, and give it the one thing it really needs: rest.

Excerpt:

It turns out that the only thing more scary than developing a life-changing disease is finding that there is no effective help available. Reality drops away from you. Nothing in your previous life carries any weight any longer; nothing can give you strength or sense; all is swallowed into an enormous void, and the void is waiting for you, and it says: You’re on your own, and there is no resisting me.

After the worst phase of physical punishment for my efforts had passed, I also found that I’d lost the little function that I’d had before starting the exercise program. And when you get as bad as I was then, you become unable to advocate for yourself. You can’t leave your bed, and even if you could, you can’t hold a conversation in real time, because your brain won’t process things quickly enough.

There I lay, abandoned by the medical establishment – or had I abandoned it? Either way, I was full of fear, and the self-doubt instilled in me by the doctor remained. Should I try again, at some point? And what was going to become of me?

It was at that point, lost, alone, that I decided to do my own research. Sure, I’d done some light googling before, enough to find out that graded exercise was the only real option open to me (it was either that or cognitive behavioural therapy, designed to persuade me that I should think more positively and get active again – sound familiar?). But now I took a different approach, going beyond the official literature. I joined discussion forums, I started asking questions on social media, and, eventually, I learned to make sense of scientific papers.

As I dug deeper, I found that I wasn’t alone in finding the exercise programme damaging. Around the world there were hundreds of thousands – possibly millions – of people stuck in their beds like me, and in the UK a sizeable proportion believed they had been put there by exercise therapy. And the rest of the world kept on spinning, and nobody knew.

From my bed, I learned that chronic fatigue syndrome, or CFS, is sometimes also known as myalgic encephalomyelitis, or ME. And I learned that the history of ME/CFS is a story of people bewildered, in pain, and often severely disabled, and suffering the even greater cruelty of being told their symptoms are only in their mind.

On the internet I met people who had been told they were “sick, not ill”. I met people who had been informed that “you must want to die, then”. (And I spoke to several who at times had felt that death would indeed be preferable.) I read the stories of children who had been removed from their families due to their parents’ refusal to force them to exercise.

I also met – online of course – several sufferers who had lived for months or years in darkness, unable to speak or interact, just strong enough to drink liquidised meals and drag themselves to the bathroom when necessary. But in this darkness I also found hope, support, and a sense of community.

Read more about Camilla’s experience

 

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Increase in the Regional Cerebral Blood Flow following Waon Therapy in Patients with CFS

Posted on 08/11/2017 by wames

Research abstract:

Increase in the Regional Cerebral Blood Flow following Waon Therapy in Patients with Chronic Fatigue Syndrome: A Pilot Study, by  T Munemoto, Y Soejima, A Masuda, Y Nakabeppu, C Tei, in Intern Med. 2017;56(14):1817-1824 [Epub 2017 Jul 15]

Objective:

Chronic fatigue syndrome (CFS) is a complex disorder, with no consensus on therapeutic options. However, Waon therapy has been reported to be an effective treatment. The purpose of this study was to evaluate changes in the cerebral blood flow (CBF) before and after Waon therapy in CFS patients and to investigate the correlation between such changes and the therapeutic efficacy of Waon therapy.

Methods:

Eleven patients (2 men and 9 women, mean age 27 years old) diagnosed with CFS participated in the study. The disease duration was 8-129 months, and the performance status was 5-8 (on a scale of 0-9). All patients underwent CBF scintigraphy using brain single-photon emission computed tomography (SPECT) with technetium-99m ethyl cysteinate dimer (99mTc-ECD) before and after Waon therapy. CBF changes after Waon therapy were evaluated using a statistical analysis of imaging data, which was performed with a statistical parametric mapping software program (SPM5).

Results:

Waon therapy reduced symptoms in all 11 patients. We also observed an increase in the CBF within the prefrontal region, orbitofrontal region, and right temporal lobe. These results indicated that an improvement in clinical symptoms was linked to an increase in the CBF.

Conclusion:

The results indicated abnormalities of the cerebral function in the prefrontal region, orbitofrontal region, and right temporal lobe in CFS patients and that Waon therapy improved the cerebral function and symptoms in CFS patients by increasing the regional CBF. To our knowledge, this is the first report to clarify the CBF changes in CFS patients before and after Waon therapy.

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Cytokine responses to exercise & activity in patients with CFS

Posted on 08/10/2017 by wames

Cytokine responses to exercise and activity in patients with chronic fatigue syndrome: case control study, by LV Clark, M Buckland, G Murphy, N Taylor, V Vleck, C Mein, E. Wozniak, M. Smuk, P.D. White in Clinical and Experimental Immunology August 5, 2017

 

Summary:

Chronic fatigue syndrome (CFS) is characterized by fatigue after exertion. A systematic review suggested that transforming growth factor beta (TGF-beta) concentrations are often elevated in cases of CFS when compared to healthy controls. This study attempted to replicate this finding, and investigate whether post-exertional symptoms were associated with altered cytokine protein concentrations and their RNA in CFS patients.

Twenty-four patients fulfilling Centers for Disease Control criteria for CFS, but with no comorbid psychiatric disorders, were recruited from two CFS clinics in London, UK. Twenty-one healthy, sedentary controls were matched by gender, age, and other variables. Circulating proteins and RNA were measured for TGF-beta, TNF, IL-8, IL-6 and IL-1beta. We measured six further cytokine protein concentrations (IL-2, IL-4, IL-5, IL-10, IL-12p70, and IFN-gamma). Measures were taken at rest, and before and after both commuting and aerobic exercise.

CFS cases had higher TGF-beta protein levels compared to controls at rest (median (quartiles) = 43.9 (19.2, 61.8) versus 18.9 (16.1, 30.0) ng/ml) (p = 0.003), and consistently so over a nine-day period. However, this was a spurious finding due to variation between different assay batches.

There were no differences between groups in changes to TGF-beta protein concentrations after either commuting or exercise. All other cytokine protein and RNA levels were similar between cases and controls. Post-exertional symptoms and perceived effort were not associated with any increased cytokines.

We were unable to replicate previously found elevations in circulating cytokine concentrations, suggesting that elevated circulating cytokines are not important in the pathophysiology of CFS.

 

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Epigenetics study highlights metabolic problems in ME/CFS

Posted on 08/10/2017 by wames

Health rising blog post, by Cort Johnson, 30 July 2017: Epigenetics Study Highlights Metabolic Problems in Chronic Fatigue Syndrome (ME/CFS)

There was a time that the HPA axis was “it” in chronic fatigue syndrome. More studies have been done on the powerful glucocorticoid hormone cortisol than other factor in ME/CFS, and it’s not hard to understand why. Cortisol not only plays a major role in the stress response and getting the body the energy it needs, but it’s also an important immune regulator. The low cortisol levels in ME/CFS seemed to fit it perfectly: not only did people with ME/CFS report feeling both wired and tired, but their immune systems seemed to be shifted in just the direction one would expect.

The cortisol levels turned out to be only mildly low, though, and then only in the morning, suggesting that cortisol by itself was not “it” for a disease as disabling as chronic fatigue syndrome. Other studies suggested, however, that other problems might exist in the fantastically complex HPA axis. One study showing a reduced responsiveness to cortisol suggested that cortisol levels might not need to be low for significant problems to show up.

Then Broderick’s model suggested that HPA axis issues probably played a major role in this disease.  As with most measures in ME/CFS, it seems that crude measures like cortisol levels just don’t work well. You have to stimulate something, or see how it interacts, or see how the network it’s embedded with is doing to get the real story.  In other words, you have to dig deeper.

O Canada
That’s exactly what Patrick McGowan has done. McGowan is from Canada – yet another country with a kind of Dr. Jekyll and Mr. Hyde-like history with ME/CFS. Canada, of course, birthed the Canadian Consensus Criteria – the most influential criteria in ME/CFS’s recent history, and the first to make post-exertional malaise a hallmark symptom. (Bruce Carruthers, the lead author of the Criteria, recently died.)

Canada has also given ME/CFS some notable researchers including Patrick McGowan, Lasker Award winner Mark Houghton, the data miners and modelers Gordon Broderick and Travis Crawford of Dr. Klimas’ Institute for Neuroimmune Studies, David Patrick as well as some prominent MD’s; Dr. Byron Hyde, Dr. Bested, Dr. Kerr, Dr. Eleanor Stein and others.

Canada also had its Dr. Jekyll and Mr. Hyde-ish side. British Columbia produced one of the rare centers for ME/CFS (good) which Dr. Bested rather quickly resigned from (bad). Canada also opened up a grant package for ME/CFS (good) and then put someone who didn’t believe ME/CFS was a disease in charge of its application review (bad).

Introduced to ME/CFS via the Solve ME/CFS Initiative grant, McGowan’s earlier epigenetics study highlighted immune changes. Then McGowan scored a big private foundation grant. Now he, his University of Toronto PhD student, Wilfred de Vega, and Suzanne Vernon (who introduced McGowan to ME/CFS) have produced a fascinating study: Epigenetic modifications and glucocorticoid sensitivity in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)

Read more about this study

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A plea from a fallen doctor on ME/CFS

Posted on 08/10/2017 by wames

Reddit blog post, 9 Aug 2017: A plea from a fallen doctor on Chronic Fatigue Syndrome (ME/CFS)

I was educated at Baylor and practiced medicine for 30 years. I had a thriving practice, a rich social life, and excellent physical and mental health. I loved what I did and loved my life. I ran marathons, spoke at conferences, and chaired non-profits.

I am now completely bedridden from post viral CFS.

I am writing this to beg my fellow colleagues to take this disease seriously, understand that it is 100% organic in origin, and that it can happen to anyone.

I used to see CFS patients fairly often in my practice. Some of them were quite debilitated and some semi-functional. I always tried to be sympathetic and did what I could to help, but truth be told there was always a voice in my head questioning if their symptoms were psychosomatic. At times I delayed a diagnosis because the literature told me to wait 6 months. I recommended exercise, antidepressants, and psychotherapy because that had always been the conventional wisdom.

And when patients didn’t come back, I subconsciously assumed they had gotten better, and that I was justified in my approach. I feel tremendous guilt about this now.

When I got the flu that started this, I thought I would be out of work for 10 days. 10 days turned into 10 weeks, and then 10 months. The virus was gone, my labs were clean, and yet I still felt horribly ill.

My symptoms:

  • I could barely stand up in the shower due to orthostatic intolerance.
    Later my wife would have to install a shower chair
  • I could not read or write due to cognitive dysfunction
  • I could not walk more than 45 steps without extreme lactic build up in my muscles
  • Any minor extortion would produce an intensifying of symptoms for several days
  • Add on insomnia, sensitivity to noise and light, and uncharacteristic emotional lability and you understand the hell my life became

Every type of conventional medical test came back negative or could not explain symptoms. My own family thought I was crazy (not to mention my friends, cohort, and colleagues).

Of course I tried the standard things I told my patients to do.
Antidepressants were hit or miss as they so often are and did not touch the core symptoms. Psychotherapy was helpful for coping.
Exercise of any kind was a complete unmitigated disaster that severely and permanently worsened my state.

Finally I did find lab abnormalities. Cytokines. Krebs cycle metabolites. Near zero ADH. As I lay bed-bound I slowly regained the ability to process complex data, and I poured through the research and discovered that yes this is a very real illness with organic abnormalities documented as early as 1932. Why aren’t we taught this in medical school?

I tried antivirals, antibiotics, hormone replacement, and yes I’ll admit, even some more questionable alternative medicine protocols.
Nothing worked.

Finally I went into remission using a combination of monoclonal antibodies (Rituxan, Cosyntex, Enbrel). Remission was glorious. I took my wife to Costa Rica, played with my grandchildren, and learned how to sail. And then I relapsed for no good reason and hell returned. As of yet I have been unable to reproduce the first remission.

I beg other doctors to take this to heart. CFS is a real disease, as bad as end stage AIDS or cancer. It is also treatable, but only through trial and error, and even then nothing is guaranteed.

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Physiological measures in participants with CFS, MS & healthy controls following repeated exercise: a pilot study.

Posted on 08/10/2017 by wames

Research abstract:

Physiological measures in participants with chronic fatigue syndrome, multiple sclerosis and healthy controls following repeated exercise: a pilot study by LD Hodges, T Nielsen, D Baken in Clin Physiol Funct Imaging 2017 Aug 7. [Epub ahead of print]

PURPOSE:

To compare physiological responses of chronic fatigue syndrome (CFS/ME), multiple sclerosis (MS) and healthy controls (HC) following a 24-h repeated exercise test.

METHODS:

Ten CFS, seven MS and 17 age- and gender-matched healthy controls (10, CFS HC; and seven, MS HC) were recruited. Each participant completed a maximal incremental cycle exercise test on day 1 and again 24 h later. Heart rate (HR), blood pressure (BP), rating of perceived exertion (RPE), oxygen consumption (V˙O2), carbon dioxide production and workload (WL) were recorded. Data analysis investigated these responses at anaerobic threshold (AT) and peak work rate (PWR).

RESULTS:

On day 2, both CFS and MS had significantly reduced max workload compared to HC. On day 2, significant differences were apparent in WL between CFS and CFS HC (93 ± 37 W, 132 ± 42 W, P<0·042). CFS workload decreased on day 2, alongside a decrease in HR but with an increase in V˙O2 (ml  kg  min-1 ). This was in comparison with an increase in WL, HR and V˙O2 for CFS HC. MS demonstrated a decreased WL compared to MS HC on both days of the study (D1 81 ± 30 W, 116 ±30 W; D2 84 ± 29 W, 118 ± 36 W); however, patients with MS were able to achieve a higher WL on day 2 alongside MS HC.

CONCLUSION:

These results suggest that exercise exhibits a different physiological response in MS and CFS/ME, demonstrating repeated cardiovascular exercise testing as a valid measure for differentiating between fatigue conditions.

MEA Review: To the heart of the issue – new study on two-day CPET in M.E. and MS

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OMF’s Symposium on the Molecular Basis of ME/CFS 12 Aug 2017 – watch online

Posted on 08/09/2017 by wames

Community Symposium on the Molecular Basis of ME/CFS
Sponsored by Open Medicine Foundation (OMF)
Saturday, August 12, 2017

The Open Medicine Foundation (OMF) is pleased to announce that the Community Symposium on the Molecular Basis of ME/CFS at Stanford University on Saturday, August 12th will be live-streamed.

The event will begin at 9:00 AM Pacific Time and will conclude at 5:00 PM Pacific Time or 5pm – 1am.

Patients, parents, researchers, clinicians, family and friends are invited to register to watch all or part of the program from anywhere in the world via live-stream.

Pre-registration is required. Please register to watch the program live. Please tell a friend – forward this announcement to share this unique experience with our worldwide community.

Confirmed speakers:

Ronald W. Davis (Stanford)

Robert Naviaux (UCSD)

Chris Armstrong (U Melbourne)

Jonas Bergquist (Uppsala U)

Maureen Hanson (Cornell)

Neil McGregor (U Melbourne)

Baldomero Olivera (U Utah)

Mark Davis (Stanford)

Alan Light (U Utah)

Alain Moreau (U Montreal)

Wenzhong Xiao (MGH)

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