ME/CFS: evidence for an autoimmune disease

Posted on 04/16/2018 by wames

Review Abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Evidence for an autoimmune disease by Franziska Sotznya, Julià Blancob, Enrica Capellid, Jesús Castro-Marrerof, Sophie Steinera, Modra Murovskag, Carmen Scheibenbogen in Autoimmun Rev. 2018 Apr 7. pii: S1568-9972(18)30088-0. [Epub ahead of print]

Highlights

  • The pathogenesis of ME/CFS is multifactorial, and immunological and environmental factors play a role.
  • Autoimmune mechanisms can be linked with ME/CFS at least in a subset of patients.
  • Autoantibodies mostly against nuclear and neurotransmitter receptors are found in a subset of ME/CFS patients.
  • Immunomodulatory therapeutic strategies targeting autoantibodies may be beneficial and should be pursued.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a frequent and severe chronic disease drastically impairing life quality. The underlying pathomechanism is incompletely understood yet but there is convincing evidence that in at least a subset of patients ME/CFS has an autoimmune etiology.

In this review, we will discuss current autoimmune aspects for ME/CFS. Immune dysregulation in ME/CFS has been frequently described including changes in cytokine profiles and immunoglobulin levels, T- and B-cell phenotype and a decrease of natural killer cell cytotoxicity. Moreover, autoantibodies against various antigens including neurotransmitter receptors have been recently identified in ME/CFS individuals by several groups.

Consistently, clinical trials from Norway have shown that B-cell depletion with rituximab results in clinical benefits in about half of ME/CFS patients. Furthermore, recent studies have provided evidence for severe metabolic disturbances presumably mediated by serum autoantibodies in ME/CFS. Therefore, further efforts are required to delineate the role of autoantibodies in the onset and pathomechanisms of ME/CFS in order to better understand and properly treat this disease.

Posted in News | Tagged , , , , , , , | Comments Off on ME/CFS: evidence for an autoimmune disease

Helping others understand your pain

Posted on 04/14/2018 by wames

Pro Health blog post, by Sarah Anne Shockley, 14 April 2018: Helping others understand your pain

I’m always surprised when people ask me, are you still in pain? or are you in pain right now? But, of course, how could they know?

It can be difficult for them to even begin to imagine how pervasive the experience of chronic pain actually is or to comprehend the experience. That’s understandable. In a way, those of us living with chronic pain live in a different world, a world dominated by pain and our response to it.

With the best of intentions, our doctors, friends, and caretakers often compartmentalize our pain into a condition that we “have” (as if it were separate from our experience) or into an area of our body that is compromised. This might be useful sometimes for short-term conditions and pain, but life in chronic pain, unfortunately, is not that straightforward.

If they wish to be of help, medical professionals, friends, coworkers and family need to know more about what we go through on a daily basis. Not to have a pity party, but to create a groundwork of understanding so that they can create better treatment plans, understand when we say no, and stop pushing for us to act normal.

They need to know that pain is not an isolated experience. It’s not neatly cordoned off into one area of our bodies. It affects our whole body, our mind, our emotions, and the way we feel about ourselves, life, and others.

Here’s a list of 15 ways to explain how pain affects us that may be useful in communicating your experience to others:

  • I live inside a sphere of fog.
  • It’s like pain doesn’t stay in my body––I’m also sensitive to the space around me.
    I fatigue easily. Sometimes the simplest of tasks and activities wear me out.
  • Being in pain is exhausting.
  • I sometimes feel like I have the flu and jet lag at the same time.
  • My brain doesn’t work well––sometimes I have blank spaces, and sometimes I just can’t use my mind in a constructive way, as if it is offline.
  • My short-term memory is sporadic.
  • I have trouble focusing, in fact, trying to concentrate can make me feel worse.
  • I’m always sleep deprived and often feel like a zombie.
  • My pain travels and morphs––it’s not always in the same place or of the same kind.
  • I don’t know how I’m going to feel on any given day.
  • I have to find a way to live with hope while being repeatedly disappointed.
  • Because of my pain, there is no certainty to my future, and that can be scary.
  • I feel like I have little or no control over my body or my life.
  • I’m often on hyper alert and overwhelm easily.

For some of you this list may seem depressing, but in talking with many people in pain, I’ve found that it’s often something of a relief to have these “side effects” of chronic pain recognized, acknowledged and understood. Many times people have said to me, “Oh other people experience that too? I thought it was just me.” And they breathe a sigh of relief.

My hope is that this article will help you articulate the extent of your experience of pain to those who need to know. I also hope that it will help you feel more validated and know that you are not alone. We all have our private experience of pain, of course, but on some level we are all in this together.

A native of Connecticut, Sarah Anne Shockley is a multiple award winning producer and director of educational films, including Dancing From the Inside Out, a highly acclaimed documentary on disabled dance. She holds an MBA in International Marketing and has worked in high-tech management, as a corporate trainer, and teaching undergraduate and graduate business administration. As the result of a work related injury in the Fall of 2007, Sarah contracted Thoracic Outlet Syndrome (TOS) and has lived with debilitating nerve pain since then. She has been a columnist for Pain News Network, is a regular contributor to The Mighty. She is the author of The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain and other books on living with pain, and currently resides in the San Francisco Bay Area

Posted in News | Tagged | Comments Off on Helping others understand your pain

Prof Jason invites you to take part in research into abnormal response to exertion

Posted on 04/13/2018 by wames

DePaul University, Chicago questionnaire, by Prof Leonard Jason: Abnormal Response to Physical and/or Cognitive Exertion in ME and CFS

We are conducting a research study because we are trying to learn more about the experience of abnormal responses to physical and/or cognitive exertion, which has been referred to as post-exertional malaise (PEM) in past research, in patients with Myalgic Encephalomyelitis (ME) and/or Chronic Fatigue Syndrome (CFS).

Due to an ongoing debate about how to define and measure abnormal responses to physical and/or cognitive exertion, the patient community aided in the development of this questionnaire to try to understand how this symptom effects these patients health. We are asking you to be in the research if you have a diagnosis of ME or CFS, speak English, and are 18 years of age or older.

The survey will include questions about your abnormal responses related to your ME or CFS. We will also collect some personal and demographic information about you, such as age, gender, race, marital status, income, level of schooling, and work status. The full survey can be completed online. If there is a question you do not want to answer, you may skip it.

This study may take 1-2 hours of your time. We understand that this may be difficult to complete, so you may take as many breaks as you’d like, and you may work on this survey over several days. Research data collected from you will be anonymous.

Complete the survey

NB to save part way through scroll right to end and click save there.  It will send a return code.

Read more about the research

DePaul University ME & CFS research team

Posted in News | Tagged , , , | Comments Off on Prof Jason invites you to take part in research into abnormal response to exertion

Lower regulatory frequency for postural control in patients with FM & CFS

Posted on 04/12/2018 by wames

Research article abstract:

Lower regulatory frequency for postural control in patients with fibromyalgia and chronic fatigue syndrome by Omid Rasouli, Ottar Vasseljen, Egil A. Fors, Håvard W. Lorås, Ann-Katrin Stensdotter in PLOS One [Published: April 4, 2018]

As many similar symptoms are reported in fibromyalgia (FM) and chronic fatigue syndrome (CFS), underlying defcits may potentially also be similar. Postural disequilibrium reported in both conditions may thus be explained by similar deviations in postural control strategies.

75 females (25/group FM, CFS and control, age 19–49 years) performed 60 s of quiet standing on a force platform in each of three conditions: 1) firm surface with vision, 2) firm surface without vision and, 3) compliant surface with vision. Migration of center of pressure was decomposed into a slow and a fast component denoting postural sway and lateral forces controlling postural sway, analyzed in the time and frequency domains.

Main effects of group for the antero-posterior (AP) and medio-lateral (ML) directions showed that patients displayed larger amplitudes (AP, p = 0.002; ML, p = 0.021) and lower frequencies (AP, p < 0.001; ML, p < 0.001) for the slow component, as well as for the fast component (amplitudes: AP, p = 0.010; ML, p = 0.001 and frequencies: AP, p = 0.001; ML, p = 0.029) compared to controls. Post hoc analyses showed no significant differences between patient groups.

In conclusion, both the CFS- and the FM-group differed from the control group. Larger postural sway and insufficient control was found in patients compared to controls, with no significant differences between the two patient groups.

Posted in News | Tagged , , , , , , | Comments Off on Lower regulatory frequency for postural control in patients with FM & CFS

Disequilibrium & orthostatic intolerance in patients with ME (CFS)

Posted on 04/12/2018 by wames

Research abstract:

The etiologic relation between disequilibrium and orthostatic intolerance in patients with myalgic encephalomyelitis (chronic fatigue syndrome) by K Miwa, Y Inoue in J Cardiol. 2018 Mar 24. pii: S0914-5087(18)30058-3 [Epub ahead of print]

Highlights:

  • Disequilibrium should be recognized as the important cause for orthostatic intolerance (OI).
  • Most patients with disequilibrium report sitting intolerance as well as OI.
  • Disequilibrium appears to be more influential cause for OI than postural orthostatic tachycardia.

Background:
Orthostatic intolerance (OI) causes a marked reduction in the activities of daily living in patients with myalgic encephalomyelitis (ME) or chronic fatigue syndrome.

Most symptoms of OI are thought to be related to cerebral hypo-perfusion and sympathetic activation. Because postural stability is an essential element of orthostatic tolerance, disequilibrium may be involved in the etiology of OI.

Methods and Results:
The study comprised 44 patients with ME (men, 11 and women, 33; mean age, 37±9 years), who underwent neurological examinations and 10-min standing and sitting tests.

Symptoms of OI were detected in 40 (91%) patients and those of sitting intolerance were detected in 30 (68%). Among the 40 patients with OI, disequilibrium with instability on standing with their feet together and eyes shut, was detected in 13 (32.5%) patients and hemodynamic dysfunction during the standing test was detected in 19 (47.5%); both of these were detected in 7 (17.5%) patients.

Compared with 31 patients without disequilibrium, 13 (30%) patients with disequilibrium more prevalently reported symptoms during both standing (100% vs. 87%, p=0.43) and sitting (92% vs. 58%, p=0.06) tests. Several (46% vs. 3%, p<0.01) patients failed to complete the 10-min standing test, and some (15% vs. 0%, p=0.15) failed to complete the 10-min sitting test.

Among the seven patients with both hemodynamic dysfunction during the standing test and disequilibrium, three (43%) failed to complete the standing test. Among the 6 patients with disequilibrium only, 3 (50%) failed while among the 12 patients with hemodynamic dysfunction only, including 8 patients with postural orthostatic tachycardia, none (0%, p=0.02) failed.

Conclusion:
Patients with ME and disequilibrium reported not only OI but also sitting intolerance. Disequilibrium should be recognized as an important cause of OI and appears to be a more influential cause for OI than postural orthostatic tachycardia in patients with ME.

Link: https://www.ncbi.nlm.nih.gov/pubmed/29588088

Posted in News | Tagged , , , , , | Comments Off on Disequilibrium & orthostatic intolerance in patients with ME (CFS)

Residential care savings limit increases in Wales

Posted on 04/11/2018 by wames

Welsh Government news post, 9 April 2018: Residential care savings limit increases in Wales

From today, people in Wales are able to keep up to £40,000 of their money before they need to self-fund the full cost of their residential care, the Welsh Government has confirmed.

A capital limit determines whether a person pays for the full cost of their residential care, or whether they receive financial support towards the cost from their local authority.

The Welsh Government’s Programme for Government commits Ministers to increasing this capital limit used by local authorities who charge for residential care from £24,000 to £50,000 during the current Assembly term.

The capital limit in Wales is the highest in the UK. In England, people with capital and savings above £23,250 have to fund all of their own residential care.

The increase is being delivered in a phased approach, starting in April 2017 when the limit was increased to £30,000. The capital limit has today increased further from £30,000 to £40,000.

There are up to 4,000 care home residents who pay for the full cost of their care. Around 450 care home residents have already benefitted from the increase last year, with a steady increase in this number expected.

Social Care Minister, Huw Irranca-Davies said:

“This is the second step in delivering one of our top six ‘Taking Wales Forward’ commitments to more than doubling the amount of capital a person in residential care can retain without having to use this to pay for their care.

“From today, the capital limit is rising from £30,000 to £40,000, thereby allowing residents to retain a further £10,000 of their hard earned savings and other capital to use as they wish. By the end of the currently Assembly, the limit will be raised to £50,000.

“This is another firm example of this Welsh Government delivering its commitments to the people of Wales”

Posted in News | Tagged , , , | Comments Off on Residential care savings limit increases in Wales

Did a Multiple Sclerosis study give us clues about ME/CFS & FM?

Posted on 04/11/2018 by wames

Simmaron Research blog post, by Cort Johnson, 19 March 2018: Did a Multiple Sclerosis study give us clues about ME/CFS and Fibromyalgia?

Why should a blog focused on chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) be interested in multiple sclerosis? Because some distinct similarities exist between the three diseases, and when diseases like ME/CFS and FM aren’t getting much research, sometimes it pays to pay attention to diseases that are. You never know what insights might open up.

For the record, while multiple sclerosis is not as disabling as ME/CFS (yes – studies indicate that ME/CFS is more disabling than MS), MS is considered one of the most fatiguing diseases known.  (Dr. Light’s study actually found more fatigue in MS but much less post-exertional malaise ME/CFS.)

A “Fatigue” Disorder No More? – What Multiple Sclerosis Taught Us About Fatigue and Chronic Fatigue Syndrome

Additionally, MS like ME/CFS and FM, mostly strikes women in mid-life. Plus, having mononucleosis/glandular fever increases the risk of coming down with either ME/CFS or MS and one suspects, FM as well.  Infections often trigger relapses in both MS and ME/CFS. Pregnancy also often brings a respite for women with either MS or ME/CFS (often unfortunately followed by a relapse.) Central nervous system involvement is present in all three diseases. In fact, Simmaron’s spinal fluid study found similar levels of immune dysregulation in ME/CFS and multiple sclerosis.

Simmaron’s Spinal Fluid Study Finds Dramatic Differences in Chronic Fatigue Syndrome

Lastly, check out an amazing story where an ME/CFS patient misdiagnosed with MS responded to an MS drug with a complete remission of her symptoms – A Chronic Fatigue Syndrome/POTS Patient Responds to a Multiple Sclerosis Drug – What Does It Mean?

Read the full article for a discussion of how research into the hormonal and autoimmune components of MS might through light on ME/CFS

Posted in News | Tagged , , , | Comments Off on Did a Multiple Sclerosis study give us clues about ME/CFS & FM?

Much can be done to ease ‘CFS’ symptoms – US 2018 Clinician Summit reports

Posted on 04/11/2018 by wames

Reports from the 2 day ME/CFS Clinician Summit 2018 held in Salt Lake City Utah.

1. Bateman Horne Center blog post, by Stephanie Griffin, 12 March 2018: A consensus-driven ME/CFS clinician coalition takes shape

The primary outcomes are two-fold.

First, an evidence-based paper on diagnostic and treatment methods to be published in a peer-reviewed medical journal and

Secondly, to produce a paper for the research community focused on clinician guided treatment trials, identification of possible illness subsets, and observations of illness presentation.

There are many other goals to accomplish through this effort. Most notably, encouraging clinicians and researchers into the field and the most efficient and effective ways to mainstream the illness within the medical community.

Consensus was reached among this group of expert ME/CFS clinicians to collaborate on the denouncement of the PACE trial and the importance of language. A dialogue ensued resulting in the consensus to always use ME/CFS and not only “Chronic Fatigue Syndrome” alone which has allowed for disbelief, misconceptions and stigmas to persist.

Read the full article for more about the goals, outcomes and participants

2. Medscape blog post, by Miriam E Tucker: Much can be done to ease ‘Chronic Fatigue Syndrome’ symptoms

The article covers: Assessment; Tests; Treatments; Help with additional needs such as disability verification and aids; and the importance of Validating the illness.

Extracts:

 “One of the messages I’d like to send to physicians is not to have an all-or-nothing approach to this illness, but to break it down into its parts, and see what you can get hold of with the history, objective markers, and clinical intuition. And then, it’s not unreasonable to try some things that are not harmful or expensive,” Bateman told Medscape Medical News…

Assessing functional capacity is key, Bateman said.

“It’s an illness that impairs people’s ability to function in their daily lives. Clinicians need to ask about function, and what happens when people exert themselves both physically and cognitively.”

One revealing question is, “What would you be doing now if you weren’t ill?” Typically, as opposed to depressed patients, those with ME/CFS will have a laundry list. “Our patients are trapped in bodies that don’t work,” Bateman said. “They’re desperate to do more.”

Medications that were endorsed by a majority of the panel include low-dose naltrexone for patients with pain and cognitive dysfunction, low-dose beta blockers or fludrocortisone for those exhibiting orthostatic intolerance, and intravenous Ig for patients with a variety of immune dysfunction indications including low IgG or IgA or recurrent infections.

Also universally viewed as critical for primary management of ME/CFS is the concept of adaptive pacing. With it, patients learn to conserve their limited energy by carefully adapting their activity so as not to exceed their anaerobic thresholds and thereby precipitate a “crash.” One helpful website to offer patients is the CFIDS & Fibromyalgia Self-Help Program website.

In general, much of the approach involves thinking outside the box, and sometimes borrowing from other fields, Bateman said. For example, she points to data suggesting that amantadine may improve fatigue and cognition in multiple sclerosis. “There’s no reason we can’t give [patients with ME/CFS] a trial of amantadine. Just making these cross-connections is very helpful.”…

Read the full article

3. Video: Dr. Bateman’s Summary of Clinicians’ Summit March 2-3, 2018

 

Posted in News | Tagged , , , | Comments Off on Much can be done to ease ‘CFS’ symptoms – US 2018 Clinician Summit reports

SEID/CFS is common in sleep centre patients with hypersomnolence

Posted on 04/10/2018 by wames

Research abstract:

Systemic exertion intolerance disease/chronic fatigue syndrome is common in sleep centre patients with hypersomnolence: A retrospective pilot study, by Caroline Maness, Prabhjyot Saini, Donald L. Bliwise, Victoria Olvera, David B. Rye, Lynn M. Trotti in J Sleep Res. 2018 Apr 6:e12689 First published: 6 April 2018  [Epub ahead of print]

Symptoms of the central disorders of hypersomnolence extend beyond excessive daytime sleepiness to include non-restorative sleep, fatigue and cognitive dysfunction. They share much in common with myalgic encephalomyelitis/chronic fatigue syndrome, recently renamed systemic exertion intolerance disease, whose additional features include post-exertional malaise and orthostatic intolerance.

We sought to determine the frequency and correlates of systemic exertion intolerance disease in a hypersomnolent population.

One-hundred and eighty-seven hypersomnolent patients completed questionnaires regarding sleepiness and fatigue; questionnaires and clinical records were used to assess for systemic exertion intolerance disease. Sleep studies, hypocretin and cataplexy were additionally used to assign diagnoses of hypersomnolence disorders or sleep apnea. Included diagnoses were idiopathic hypersomnia (n = 63), narcolepsy type 2 (n = 25), persistent sleepiness after obstructive sleep apnea treatment (n = 25), short habitual sleep duration (n = 41), and sleepiness with normal sleep study (n = 33).

Twenty-one percent met systemic exertion intolerance disease criteria, and the frequency of systemic exertion intolerance disease was not different across sleep diagnoses (p = .37). Patients with systemic exertion intolerance disease were no different from those without this diagnosis by gender, age, Epworth Sleepiness Scale, depressive symptoms, or sleep study parameters.

The whole cohort reported substantial fatigue on questionnaires, but the systemic exertion intolerance disease group exhibited more profound fatigue and was less likely to respond to traditional wake-promoting agents (88.6% versus 67.7%, p = .01).

Systemic exertion intolerance disease appears to be a common co-morbidity in patients with hypersomnolence, which is not specific to hypersomnolence subtype but may portend a poorer prognosis for treatment response.

Posted in News | Tagged , , , , , , , | Comments Off on SEID/CFS is common in sleep centre patients with hypersomnolence

Circulating extracellular vesicles as potential biomarkers in CFS/ME

Posted on 04/09/2018 by wames

Research abstract:

Circulating extracellular vesicles as potential biomarkers in chronic fatigue syndrome/ myalgic encephalomyelitis: an exploratory pilot study, by Jesús Castro-Marrero, Esther Serrano-Pertierra, Myriam Oliveira-Rodríguez, Maria Cleofé Zaragoza, Alba Martínez-Martínez, María del Carmen Blanco-López & José Alegre in Journal of Extracellular Vesicles Volume 7, 2018 – Issue 1  [Published online: 22 Mar 2018]

Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME) is an acquired, complex and multisystem condition of unknown etiology, no established diagnostic lab tests and no universally FDA-approved drugs for treatment.

CFS/ME is characterised by unexplicable disabling fatigue and is often also associated with numerous core symptoms. A growing body of evidence suggests that extracellular vesicles (EVs) play a role in cell-to-cell communication, and are involved in both physiological and pathological processes. To date, no data on EV biology in CFS/ME are as yet available.

The aim of this study was to isolate and characterise blood-derived EVs in CFS/ME. Blood samples were collected from 10 Spanish CFS/ME patients and 5 matched healthy controls (HCs), and EVs were isolated from the serum using a polymer-based method. Their protein cargo, size distribution and concentration were measured by Western blot and nanoparticle tracking analysis. Furthermore, EVs were detected using a lateral flow immunoassay based on biomarkers CD9 and CD63.

We found that the amount of EV-enriched fraction was significantly higher in CFS/ME subjects than in HCs (p = 0.007) and that EVs were significantly smaller in CFS/ME patients (p = 0.014). Circulating EVs could be an emerging tool for biomedical research in CFS/ME.

These findings provide preliminary evidence that blood-derived EVs may distinguish CFS/ME patients from HCs. This will allow offer new opportunities and also may open a new door to identifying novel potential biomarkers and therapeutic approaches for the condition.

Read full article

More about extracellular vesicles

Posted in News | Tagged , , , , , , , , , , | Comments Off on Circulating extracellular vesicles as potential biomarkers in CFS/ME