Solve ME/CFS Initiative 2014 Webinar Series

July 8, 2014

Workplace-WebinarBeginning in July and continuing through year-end, the Solve ME/CFS Initiative (SMCI) will be bringing you a free, monthly webinar series. Anyone that is interested can RSVP to participate live. Each webinar will be recorded and posted to our website and YouTube channel within a week of the live date, so if you miss it, don’t worry! You can still have access to the great content at your convenience.

Read more about the series and RSVP today!

 

Suzanne

Research Institute Without Walls – Progress and Promise

HELD on Thursday, July 31, 2014
Video Link

Suzanne D. Vernon, Ph.D., scientific director of the Solve ME/CFS Initiative will provide an update on the work being conducted through our Research Institute Without Walls. Participants can also expect to learn more about how the SolveCFS Biobank works and is attracting some of the brightest investigators from the best institutions to ME/CFS research.  You will leave with an understanding of what makes the SolveCFS BioBank unique, how to get enrolled and what to expect when you participate.  Vernon will also provide a sneak peek at some of the types of research being conducted on samples using the SolveCFS BioBank.

 

McGowan

Investigator Report: Epigenetics of ME/CFS

Thursday, August 21, 2014
2-3:00pm Eastern (1pm Central/Noon Mountain/11am Pacific)

Space is limited –  RSVP to Reserve Your Slot – Click HERE

Patrick O. McGowan, Ph.D., is one of the Solve ME/CFS Initiative 2011 funded investigators.  McGowan is an assistant professor in the Department of Biological Sciences, University of Toronto at Scarborough.  He will talk about his latest results from our grant funding.  McGowan used blood samples from the SolveCFS BioBank to identify the chemical modifications (e.g., methylation) to the DNA that is different in ME/CFS patients compared to healthy people.  This type of research will help explain the immune dysfunction of ME/CFS.

 

Dane-Cook

Investigator Report: Deciphering Post-Exertional Malaise

Thursday, September 18, 2014
2-3:00pm Eastern (1pm Central/Noon Mountain/11am Pacific)

Space is limited –  RSVP to Reserve Your Slot – Click HERE

Dane B. Cook, Ph.D. is assistant professor of Kinesiology at the University of Wisconsin, Madison.  Cook is one of the Solve ME/CFS Initiative’s 2011 funded investigators.  Cook will describe the system biology approach his team is taking to provide a clear picture as to what causes post-exertional malaise.  This is critically important research for ME/CFS because as Cook notes, “You can’t begin to fix a problem like post-exertional malaise until you can understand its underlying cause.”

 

unutmaz

Investigator Report: Decoding the Human Immune Response

Wednesday, October 1, 2014
2-3:00pm Eastern (1pm Central/Noon Mountain/11am Pacific)

Space is limited –  RSVP to Reserve Your Slot – Click HERE

Derya Unutmaz, MD, is Professor of Microbiology, Pathology and Medicine at NYU Langone Medical Center.  Unutmaz is using samples from the SolveCFS BioBank to understand the “Good, Bad and Ugly” aspects of the immune response in ME/CFS.  Unutmaz hypothesizes that a disproportionate immune response leads to damage in ME/CFS.   He will describe what the immune signature of ME/CFS looks like compared to a healthy immune response.

 

PeterRoweInvestigator Report: Neuromuscular Strain in ME/CFS

Thursday, October 23, 2014
2-3:00pm Eastern (1pm Central/Noon Mountain/11am Pacific)

Space is limited –  RSVP to Reserve Your Slot - Click HERE

Peter Rowe, MD, who directs the Chronic Fatigue Clinic at Johns Hopkins Children’s Center, will describe some novel observations about restrictions in range of motion in the limbs and spine in those with ME/CFS. Many affected individuals have restricted movements and increased mechanical tension in nerves. Applying a further mechanical strain to the nervous system can provoke increased symptoms in some patients. These concepts are starting to help explain the pathogenesis of some symptoms and neurological abnormalities in the illness—not only how they might arise but also how we might treat them more effectively.

 

 

November and December webinars to be announced at a later date.

 

 

Same Mission | New Name

May 30, 2014

Solve ME/CFS Initiative

We’re delighted to announce that The Solve ME/CFS Initiative has a new name – the Solve ME/CFS Initiative.   While our name has changed, our mission steadfastly remains the same:  We will make ME/CFS understood, diagnosable and treatable.

Why the change?  We recognize the many changes in our organization and our illness space since the organization was first named so long ago in 1987.  While the name of our illness continues to be controversial, “ME/CFS” better reflects today’s understanding. And we believe that the word “initiative” (defined as ‘leading action’), expresses our strong commitment to funding ground-breaking research.

Since our organization was founded and named in 1987, we have been the leading organization focused on this illness.  Over the years, we’re proud of our remarkable advances regarding this controversial and misunderstood disease.

  • Under the 22-year leadership of Kim McCleary, the organization’s first CEO, the Association played an integral part in developing a policy ruling for the Social Security Administration that recognized CFS as a disabling condition.
  • We are the leading private funder of ME/CFS research, directly funding $5.5 million in ground breaking research which has been leveraged into more than $12 million in additional ME/CFS research.
  • The organization fought to create and continues to advocate to sustain a dedicated federal advisory committee on ME/CFS research and education (CFSAC).
  • We helped expose the misappropriation of $12.9 million in CDC spending, restoring these funds to ME/CFS research.
  • We led the first-ever public awareness campaign for ME/CFS, led lobbying events, organized Congressional briefings and regularly deliver testimony at numerous federal hearings and meetings.

Four years ago, guided by a desire to move into a new era of scientific progress on ME/CFS, the Association made a strategic decision to heighten its focus on research.  Our thinking was simple – the best way to use our precious dollars is toward solving this despicable illness.

Today, led by President and CEO, Carol Head, the organization continues to drive its mission forward – to fund research that will make ME/CFS understood, diagnosable and treatable.  How do we do that? By providing more funding for high-quality ME/CFS studies, fostering increased collaboration among ME/CFS researchers and pushing the federal government to make ME/CFS research a higher priority.  We are working to leverage our experience, relationships and collective knowledge to propel the ME/CFS research field forward. We are a catalyst for scientific advances that translate into better care for ME/CFS patients. We are accelerating ME/CFS research.

As we continue our efforts to make ME/CFS widely understood, diagnosable, and treatable, it is fitting that we have a name that more accurately reflects who we are: The Solve ME/CFS Initiative. We trust that you will continue this journey with us as we work towards a day when ME/CFS is no more.

 

Morgan Fairchild Joins SMCI in DC for IOM Report Briefing

March 12, 2015

IOM1-300x72

 

 

 

On March 25, the Solve ME/CFS Initiative will host a briefing on the Institute of Medicine report in Washington, D.C. The briefing, which will include media, congressional leaders and executive branch decision-makers, is intended to further the IOM report momentum and turn the report into action, particularly by urging additional federal research funding.  

The briefing will feature three speakers:MorganFairchild

  • Morgan Fairchild, Actress, Activist and Former Patient
  • Dr. Ellen Wright Clayton, Chair of the IOM Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
  • Carol Head, Solve ME/CFS Initiative President/CEO

While the briefing is by invitation-only due to the limited capacity of the venue, we will webcast the event so that all in our community can participate. Please register here for the webcast. We strongly recommend that you test your computer’s ability to stream the event ahead of time. We have included a link to a system check at the bottom of the registration page.

We also plan to include a slide display before the briefing with quotes from patients that answer the question, “What would you do if you were well?” Our hope is that the responses will demonstrate to those present the devastation and debilitation ME/CFS patients suffer as a result of the disease and why the need for more research funding is crucial. Please click here to respond – it will only take a moment:

IOM_WWYDSurvey

The Solve ME/CFS Initiative is committed to ensuring that this landmark report will serve as a springboard to increased federal funding, better-educated clinicians, greater public understanding, quicker diagnosis, improved treatment, and above all, a cure.

 

Guest Blog: Dr. Lucinda Bateman on the Discussion Surrounding the IOM Report

February 27, 2015

Bateman-4webLucinda Bateman, MD, specializes in the diagnosis and management of unexplained chronic fatigue, ME/CFS and fibromyalgia. She is the cofounder of OFFER, the Organization for Fatigue and Fibromyalgia Education and Research, an organization that began in 2001, when Dr. Bateman realized that there was a great need to provide support to those in our community who deal daily with ME/CFS and/or Fibromyalgia.

Dr. Bateman served on the Instituteof Medicine committee that produced the recent report, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. In this guest blog post she weighs in on the conversation surrounding the IOM report on ME/CFS, the new diagnostic criteria and the proposed name, Systemic Exertion Intolerance Disease (SEID).

This post originally appeared on the OFFER Utah website and is reprinted here with her permission.

__________

The IOM accepted the controversial contract issued by DHHS (funded by NIH, CDC, FDA, and AHRQ) and worked on the project for one year in 2014. One “Charge to the Committee” was to “develop evidence-based diagnostic criteria for use by clinicians” which involved reviewing the higher quality, peer reviewed, published scientific papers in order to determine which  illness criteria are best supported by the evidence.  An additional charge was to “recommend whether new terminology for ME/CFS should be adopted.”  The committee focused intensely on the complex project, and avoided the temptation to go beyond or outside the statement of task. The contract is now complete and the report has been delivered to the sponsor.

The complete report can be accessed online at http://iom.edu/Reports/2015/ME-CFS.aspx

The newly released ME/CFS Clinicians Guide can be accessed online HERE

Now that I am intimately familiar with the IOM process, I respect it and do not expect the IOM to change what they do just because the scientific, clinical and political conundrums around ME/CFS are particularly challenging.  The IOM almost always tackles challenging tasks.  The IOM is respected in part because of its adherence to a process with high standards.  The IOM process is not a transparent, publicly interactive or open process; it is a confidential, internally interactive, collaborative and “consensus building methodology” that was an intellectual and interpersonal challenge for those entrusted with the task.

It was not within the statement of task, or “Committee Charge,” of this particular project to establish illness etiology/cause, assess risks of blood donation, determine best treatments, design or implement studies to validate or compare case definitions, or alter the content of the report based on how it might be received.

The clinical diagnostic criteria in the report are core symptoms drawn directly from the published ME/CFS literature—much of which came from Dr. L. Jason’s works and the CDC multi-site study — informed by self-reported symptoms from patients of ME/CFS specialists (Klimas, Peterson, Natelson, Levine, Lapp, Podell, Kogelnik, Komaroff and Bateman) and the SolveCFS Biobank™.  These symptoms are important ongoing aspects of ME/CFS illness – substantially reduced functional capacity and fatigue, PEM, non-restorative sleep, neurocognitive impairment and/or orthostatic intolerance/autonomic dysfunction – that physicians have previously often missed, but that they should immediately identify and assess in order to make a diagnosis and provide care.  The symptoms must be of moderate to severe intensity and consistently present over time, an important parameter supported by Dr. Jason’s research.

The report also lists other common symptoms and manifestations of this illness that are not considered “core” or specific to the illness, not as universally present in all cases of ME/CFS, are common in other chronic conditions, or are not supported strongly by the evidence.  Nevertheless these “other symptoms” are commonly present—pain, infection onset, immune impairment and neuroendocrine manifestations – and when present in patients who meet the major criteria support the diagnosis.  The report also says clearly that the evidence isn’t strong enough yet to delineate clear subgroups, at least in a report of this type and scope.

Regarding adopting new terminology, the committee decided the answer was yes. Then while still immersed in the science, the rich input from patients, and the combined experience of the group, the committee devised a name intended to send a clear message to clinicians about the profound impact of the illness.  Multisystem. Activity limiting.  Punishing.   Then an aggressive plan of dissemination was recommended to DHHS to jump-start the process of bringing sick ME/CFS/SEID patients back into the medical and scientific mainstream.

The DHHS and the other co-sponsors have received the report and recommendations of the IOM.  In distinct contrast to the IOM process, it is the responsibility of the U.S. government to engage in a transparent, publicly interactive and open process with its citizens.

The Chronic Fatigue Syndrome Advisory Committee (that makes recommendations to the Secretary of US Department of Health and Human Services), the International Association of ME/CFS (the scientific organization), and interested advocates may certainly give DHHS input about what name should be endorsed, hopefully taking the IOM recommendations into consideration.

To quote an interested bystander observing the conflicted public response to the IOM report, “Patients should leverage the report, not try to kill it.”

As for myself….I hope that US doctors start using the criteria right away and begin to identify this illness in their patients so they can provide compassionate and informed care.  I hope that scientific progress (large, controlled, well designed and funded studies) and breakthrough treatment ideas immediately follow at a breathtaking pace.  I hope we leave name change deliberations in the dust and focus on the people who are ill.  I hope we identify subgroups, create more diagnostic tests, unravel elusive disease processes, and revise the criteria based on great scientific advances within the next 3-5 years.  I hope this conversation will soon seem old and outdated.

-      Dr. Bateman, February 2015

-      #  -

 In 2015, Dr. Bateman will be the lead clinical investigator on the $500,000 research study awarded to SMCI from the Falk Medical Research Trust. This award gives SMCI the opportunity to further grow the SolveCFS BioBank™ and to extend the exciting results generated by SMCI funded investigator Dr. Patrick McGowan. L:earn more HERE.

In a recent 3-part blog series, Dr. Bateman offered some of her best advice on the treatment of ME/CFS, honed by her many years of caring for thousands of ME/CFS patients… Access that post series here:

 

 

Guest Blog: Changing the Conversation – IOM Report Sparks Re-evaluation of ME/CFS in the Media

February 13, 2015

We took a huge leap forward this week in defining, legitimizing and ultimately finding a cure for ME/CFS. On Tuesday, the Institute of Medicine issued a forceful report that sharpened and simplified the illness’ diagnostic criteria, legitimized it as physical, not psychological, and recommended a new name designed to more accurately capture the defining traits as currently supported in the research: Systemic Exertion Intolerance Disease (SEID). The IOM committee that conducted the study over an 18-month period also stressed in its report that more research was “urgently needed.”

The announcement by the IOM generated a flurry of coverage in national media outlets, including the New York Times, the Washington Post, CBS News, the Associated Press and NBC Nightly News (more than 300 articles and stories). SMCI President and CEO Carol Head was featured in the NBC Nightly News piece and though many of her more substantive comments hit the cutting room floor, we are thrilled for the national coverage of our disease.

A medical contributor for the network made comments in the segment that elicited a strong reaction from our community, suggesting that exercise and cognitive behavioral therapy could be “very effective” in treating the illness. Like many in our community, we felt strongly about the inaccuracy of the statements, which contradict the research, and we urged NBC to issue a correction. This was posted today: http://www.nbcnews.com/nightly-news/chronic-fatigue-syndrome-gets-new-name-n305191.

While this segment contained information that is not in line with our knowledge base, we should not overlook the extraordinary gains we have made this week in drawing attention to our illness, which has been misunderstood for far too long.

In a recent blog post on Health Rising, Cort Johnson does an excellent job of looking at the IOM report, how it is changing the conversation in the mainstream media, and the potential implications for the future. With his permission, we are republishing his post in its entirety…

__________

Health Rising: Changing the Conversation: The IOM Report Sparks Re-evaluation of ME/CFS in the Media
by Cort Johnson

ThinkDifferent

I assert that for ME/CFS it’s all about changing the conversations or narratives around it that are keeping it poorly funded and mostly ignored. Once those conversations change everything else will change. What was impossible beforehand will suddenly become not just possible but natural.

In this blog we check out what conversations the IOM Report “Beyond Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Redefining an Illness” is triggering in major media outlets. Very quickly we can see two major messages the media is taking from the report are:

  • Chronic Fatigue Syndrome (or SEID) is a real and serious disorder that has been misunderstood and underfunded for years.
  • It’s main feature is not fatigue but exertion intolerance: i.e. the inability of patients to exert themselves without getting hammered.

That ME/CFS is not considered a real disease yet may be more than a bit upsetting to those that have it, but consider the possibility that the real reason ME/CFS is not getting the funding it should is because, in the places that matter, it’s embedded in a conversation or narrative that says it’s not a real and serious disease.

The key is to switch the listening at the NIH and CDC’s from something like ME/CFS “is not a real priority”  to ME/CFS is a”real and serious disease and is a priority”.  Once that message really gets home, it will start being treated like other “real diseases” and get the appropriate funding and support.

Let’s see how this report is contributing to that change of conversation in the media.

National Public Radio

“Panel Says Chronic Fatigue Syndrome Is A Disease, And Renames It”

NPR stated the obvious to us – that ME/CFS is a real disease – but not apparently everyone else as it lead with “Panel Says Chronic Fatigue Syndrome Is A Disease, And Renames It”. NPR began their article powerfully stating:

“Because there is no specific test for SEID, many people who have it haven’t been diagnosed, and healthcare professionals often have viewed patients as complainers whose symptoms are psychological, not physical. But a 15-member panel of the Institute of Medicine, an independent government advisory body with a lot of clout, says otherwise. In a report released Tuesday, the panel writes that the condition “is real,” and admonishes clinicians, “It is not appropriate to dismiss these patients by saying ‘I am chronically fatigued, too.’ “

Later Dr. Bateman illuminated how the name was chosen. Every word, she said, was packed with meaning. Systemic refers to the whole body impact that exertion has. Intolerance denoted impairment. Because the word disease had stronger connotations than the word disorder, it was chosen.

WebMD

“U.S.- appointed panel says illness is’legitimate”

WebMD doesn’t have the worst or the best ME/CFS information on the internet, but this very popular medical website had one of the best overviews of the report on the internet.  Scoring second on a Google search, it was definitely getting around.

WebMD’s  secondary headline “U.S.- appointed panel says illness is’legitimate” emphasized two important facts – the IOM panel was a federal job all the way  – with all the heft that implies –  and that ME/CFS is a real “disease”.NewDoor

The article featured Suzanne Vernon of the Solve ME/CFS Initiative (SCMI) stating she believed the report would provide a watershed moment for this disorder:

“I believe we are at a tipping point for people suffering from ME/CFS, where we are going to be able to get people diagnosed, and with that diagnosis comes the ability for us to really lay the groundwork for much more effective treatment for ME/CFS,” Suzanne Vernon

Dr. Clayton emphasized the need for more research and then repeated – this disease is real and serious. The only figment of imagination regarding whether or ME/CFS or SEID exists in the minds of MD’s and medical professionals who pooh-pooh it:

“We expect and hope more research in the future is going to allow the refinement of this diagnosis. This is not a figment of their [patients’] imagination. This is an all-too-common, complex disease that needs to be diagnosed.”

Doctors who continue to dismiss ME/CFS are going to have to have to ignore a report stating otherwise from one of the most prestigious medical research institutions in the world. WebMD did a good job, but after it featured an ME/CFS patient stating that before chronic fatigue syndrome “I could run up a flight of stairs and be a little winded but otherwise fine. Now when I do it I feel like I’m on the edge of collapse. You feel like you’ve been hit by a train”, it may want to rethink its page saying that “most people with CFS” feel worse after “strenuous” physical activity. This will be a time of reeducation for many.

Nature

In their news section, Sara Reardon of Nature – one of the most popular science journals in the world – quickly highlighted the key finding of the report – that “the key symptom of the disease  (is) the body’s inability to tolerate any exertion”. Every time that finding gets  the disease gets redefined in the eyes of the public. Note that Sara said it was the “body’s” inability  – not the mind’s inability – but the body’s inability to tolerate exertion that was key.

It was kind of ironic to see Dr. Peter Rowe  of all doctors being quoted as saying that the new diagnostic criteria  “will in the end get more people cared for and treated,” given  he’s been overwhelmed with patients for years. Jarred Younger of the Neuroinflammation, Pain and Fatigue Laboratory at the University of Alabama at Birmingham believes the report will prompt a “drastic” increase in the number of diagnoses made. That’s good news those patients and it’s very good news for the movement as a whole. More people means more support and more effective advocacy. The report should help with that, though.

WebMD, a website focused on doctors and patients, pointed out in its article on the report that  between 84-91% of people with ME/CFS are not diagnosed – a fact that underscores the need for federally funded COE’s. The report provides a strong platform for the ME/CFS community to demand more resources, and federally funded Centers of Excellence (COE)  would top the request list in that regard.

The recent work from the federal advisory committee on “CFS” (CFSAC) to document the need for COE’s is looking more and more timely all the time.

Medscape

IOM Gives Chronic Fatigue Syndrome a New Name and Definition: In one of the best reports on the web,  Dr. Clayton elucidated more reasons for the name in Miriam Tucker’s  Medscape piece stating:

“There’s a long history in medicine of symptom-based diagnostic names…. Until the etiology is better known, we wanted to focus on just the central symptoms of the disorder. This is really is the result of the current state of the science”.

The committee agreed that the evidence did link chronic fatigue syndrome to immune dysfunction and infection but it wasn’t strong enough yet to base a name on it. The cardiopulmonary tests impressed Dr. Clayton enough for her to emphatically state that “The level of response is much more than would be seen with deconditioning,”  Dr Rowe pointed out the obvious – which apparently needs to be repeated again and again – that deconditioning could not play a role in people who were physically active before they suddenly  became ill.

While many in the ME/CFS community have been understandably wary of putting their future in the hands of outsiders, Dr. Rowe found that the non-ME/CFS experts in the committee quickly came to the same conclusions as the ME/CFS experts. That suggests that a key aspect of building allies simply requires finding ways to get people better informed about this illness is  Once they are – they get it.

“It was a unanimous committee report…. It was interesting for us who are clinicians in the field to see how obvious the direction of the evidence was for those who are scientists, but not specialists in this area.”

Dr. Peter Rowe Dr. Clayton – the outsider turned advocate – suggested that the science is moving quickly enough that they may have to reassess their findings not in five years but perhaps in two or three.

“We really think this is an area where things are moving relatively quickly. If, as we hope, what this report does is elicit greater interest and a greater recognition from entities that they need to be funding more research, and if in fact the research ramps up in the way we hope that it will, it would be lovely if we knew enough in the next 2 or 3 years that it was time to reexamine this.”

Younger believes the report will have a “long-lasting” effect on the field and that we are finally seeing a “true push to recognize SEID as an important medical entity”.

In a SFGate report “Fatigue syndrome validated by influential group“ Dr. Jose Montoya, the leader of the Chronic Fatigue Initiative at Stanford University asserted that this report has the potential to fundamentally change the narrative surrounding this illness.

“The Institute of Medicine was able to come out and say this is real, it’s chronic and it devastates many lives…For 30 years very few voices were saying that and people were not listening. And now here comes an institute with such visibility and clout, saying those words…..(The report) has the potential to change the narrative of this disease”

Choices

The IOM report will help to break the hold on the inaccurate conversations around ME/CFS that have allowed federal funders and others to essentially ignore it. How big of a change it will make is, of course, unclear.

The Feds have a choice at this point – agree with the reports findings and significantly ramp up research funding and fund Center’s of Excellence –  or find a way to dismiss the report, and go on their way as they have in the past. The Feds are the major emphasis because they control an enormous amount of medical funding, but it’s hard to imagine that this report isn’t also having very positive effects at the research centers at Stanford, Columbia, Nova Southeastern University, the University of Alabama at Birmingham  the Univ. of Nevada at Reno that are studying ME/CFS as well.

A rising tide lifts all boats.

- #  -

Reprinted with permission: Changing the Conversation: the IOM Reports Sparks Re-evaluation of ME/CFS in the Media
http://www.cortjohnson.org/blog/2015/02/11/iom-re-evalution-chronic-fatigue-syndrome-media/

Pearls of Wisdom from a CFS Physician, part 3

February 13, 2015

Bateman-4webBy Lucinda Bateman, MD

In this 3-part blog series, Dr. Bateman brings you some of her pearls of wisdom on treatment of ME/CFS, honed in her many years of caring for thousands of ME/CFS patients…

Lucinda Bateman, MD, specializes in the diagnosis and management of unexplained chronic fatigue, ME/CFS and fibromyalgia. She is the cofounder of OFFER, the Organization for Fatigue and Fibromyalgia Education and Research and has served on the Solve ME/CFS Initiative’s Board of Directors in the past. In 2015, Dr. Bateman will be the lead clinical investigator on the $500,000 research study awarded to SMCI from the Falk Medical Research Trust.  This award gives us the opportunity to further grow the SolveCFS BioBank and to extend the exciting results generated by SMCI funded investigator Dr. Patrick McGowan.

Learn more about the grant awarded to SMCI to fund this study HERE

Learn more about Dr McGowan’s SMCI funded research HERE

And access the paper describing his exciting results HERE

 

In part 1, Dr. Bateman spoke about building emotional resilience and achieving the most restorative sleep possible. Read part 1 HERE

In part 2, Dr. Bateman discussed achieving reasonable pain control and balancing physical pacing with physical conditioning. Read part 2 HERE.

These pearls of wisdom aren’t listed in any particular order; each of them are helpful in managing ME/CFS patient care. Hopefully the information shared in these posts will help you identify areas you and your health care team can explore.

______

Pearl 5: Identify and treat comorbid conditions

There are a number of medical conditions, often subtle in presentation, that frequently overlap or occur in combination (are comorbid) with ME/CFS. These conditions have well known diagnostic and treatment plans that a medical professional can follow whether familiar with ME/CFS or not. Since each untreated condition may worsen ME/CFS symptoms, any improvement in symptoms of comorbid conditions is progress in reducing the severity of ME/CFS.

Here are some of the more common comorbid conditions present in people with ME/CFS:

  • Sleep disorders (such as obstructive or central sleep apnea; restless legs syndrome, periodic limb movement or myoclonus; excessive sleepiness)
  • Allergies, chronic sinusitis and reactive airway disease (asthma)
  • Irritable bowel syndrome (IBS), reflux and heartburn (GERD), lactose intolerance, celiac disease
  • Focal pain conditions such as osteoarthritis, cervical or lumbar disc disease
  • Primary or secondary mental health conditions (such as attention deficit disorders, depression, anxiety)
  • Metabolic syndrome (primary or secondary) and type II diabetes
  • Hormone imbalances or dysregulation (such as menopause, low testosterone, hypothyroidism, polycystic ovarian syndrome)
  • Chronic or recurrent infections (such as herpes or shingles outbreaks)
  • Vitamin D and vitamin B12 deficiency or “low normal” values People with ME/CFS should learn about their own comorbid conditions, and in partnership with a medical professional, see that they get the best supportive treatment available.

 * In the Institute of Medicine (IOM) report on ME/CFS, released earlier this week, one of the recommendations dealt with the issue of comorbid conditions, stating that physicians should diagnose ME/CFS if diagnostic criteria are met, following an appropriate history, physical examination, and medical work-up. The committee clearly called for the removal of the exclusionary rule; existing criteria specify that if fibromyalgia, Lyme disease or a host of other known co-morbid conditions are diagnosed, then ME/CFS cannot be diagnosed. Comorbid diseases frequently occur and the committee stated that it is incumbent upon the physician to make the ME/CFS diagnosis as well and then do all they can to treat it. In the past, the exclusionary rule for ME/CFS diagnosis has slowed research progress. This new recommendation should improve research effectiveness and progress in the future.

Read more about the IOM Report HERE

 

Wisdom applied

The relevance of these clinical pearls of wisdom depends on the features of each individual’s illness, but each of them benefit CFS patients by improving functionality and quality of life. With a chronic condition like ME/CFS, this can go a long way toward helping patients manage their illness while we search for targeted interventions and ultimately a cure.

 

You can download a single PDF with all of the information from this 3-part blog series HERE

 

 

IOM Report Released – Recommends New Diagnostic Criteria, Calls for More Research, and Proposes New Disease Name

February 10, 2015

IOM_ReportCoverToday, the Institute of Medicine released its much anticipated report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Redefining an Illness”.
The report put forth four key recommendations:

  1. HHS should develop a toolkit appropriate for screening and diagnosing patients with ME/CFS in a wide array of clinical settings in which these patients are encountered…

-  The committee put forth new diagnostic criteria that is far less complicated and more readily deployed in the clinical setting. A simpler criteria will lead to better, faster diagnosis. The new criteria is based on 4 of 5 core symptoms, requiring:

    • A substantial reduction in activity
      • More specifically: A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest
    • Post exertional malaise
    • Unrefreshing sleep
    • Either cognitive impairment or orthostatic intolerance

- These criteria build on existing ones, especially the Canadian Consensus Criteria (CCC), and also took into account the 10 years of research since the CCC was drafted.

  1. Physicians should diagnose ME/CFS if diagnostic criteria are met, following an appropriate history, physical examination, and medical work-up. A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Edition (ICD-10) that is not linked to “chronic fatigue” or “neurasthenia” (emotional disturbance)…

-  The committee clearly called for the removal of the exclusionary rule; existing criteria specify that if fibromyalgia, Lyme disease or a host of other known co-morbid conditions are diagnosed, then ME/CFS cannot be diagnosed. Comorbid diseases frequently occur and the committee stated that it is incumbent upon the physician to make the ME/CFS diagnosis as well.

-  In the past, the exclusionary rule for ME/CFS diagnosis has slowed research progress. This new recommendation should improve research effectiveness and progress in the future.

  1. The disease be renamed “systemic exertion intolerance disease” (SEID), noting that the term “chronic fatigue syndrome” can result in stigmatization and trivialization and should no longer be used.

-  The new name is intended to emphasize that this is a serious, complex systemic disease that frequently and dramatically impacts the lives of affected individuals

  1. Within 5 years, the diagnostic criteria set forth in this report should be re-examined when firm evidence supports modification to improve identification and care of patients

-  The IOM realizes this is a learning process and there is much more to be done. It was explicitly stated that “we have made breathtakingly clear with HHS and others, the need for more research

In the report the committee underscored the profound impact that ME/CFS has on the millions who suffer from it worldwide (est. 17 million) and the importance of getting people diagnosed. They estimate that more than 90% may not be diagnosed. ME/CFS costs the US economy between $17 to $24 billion annually in lost productivity and medical costs. Federal spending is woefully disproportionate (a mere $5 million annually) despite significant disease burden and costs. The goal of this report is to make ME/CFS – or SEID – more readily diagnosable and it issues a strong call for clinicians to take it seriously.

Already, in today’s Journal of the American Medical Association (JAMA), there is an important article about the new diagnostic criteria for ME/CFS, put forth in today’s IOM Report. JAMA is the most widely circulated medical journal in the world, with more than 325,000 print recipients and more than 14 million visits to the journal’s website annually.

The Solve ME/CFS Initiative thanks the volunteer members of the IOM committee, the sponsors of the project (HHS, AHRQ, CDC, FDA, NIH, and SSA), project participants and staff, and – most importantly – the patient community and advocates for their heroic efforts to ensure the best possible outcome. At first glance we are pleased with the committee’s recognition of the impact that ME/CFS has on the lives of millions, while recognizing there is still much to be done.

The Solve ME/CFS Initiative is committed to working with patients, researchers, federal agencies and experts in the field, to review the report’s recommendations and ensure appropriate next steps. We see this report as a critical step forward, providing the foundation for greater action to diagnose and treat patients and advance research. This opportunity must be seized. The patients, who for too long have received inadequate care and attention, deserve better.

 

Access the full IOM Report, Presentation and Diagnostic Algorithm HERE

http://www.iom.edu/Reports/2015/ME-CFS.aspx

Pearls of Wisdom from an ME/CFS Physician, part 2

February 10, 2015

Bateman-4webBy Dr. Lucinda Bateman

In this 3-part blog series, Dr. Bateman brings you some of her best advice on the treatment of ME/CFS, honed in her many years of caring for thousands of ME/CFS patients through the years…

Lucinda Bateman, MD, specializes in the diagnosis and management of unexplained chronic fatigue, ME/CFS and fibromyalgia. She is the cofounder of OFFER, the Organization for Fatigue and Fibromyalgia Education and Research and has served on the Solve ME/CFS Initiative’s Board of Directors in the past. In 2015, Dr. Bateman will be the lead clinical investigator on the $500,000 research study awarded to SMCI from the Falk Medical Research Trust.  This award gives us the opportunity to further grow the SolveCFS BioBank and to extend the exciting results generated by SMCI funded investigator Dr. Patrick McGowan.

Learn more about the grant awarded to SMCI to fund this study HERE

Learn more about Dr McGowan’s SMCI funded research HERE

And access the paper describing his exciting results HERE

In part 1, Dr. Bateman spoke about building emotional resilience and achieving the most restorative sleep possible. Read part 1 HERE

These pearls of wisdom aren’t listed in any particular order; each of them are helpful in managing ME/CFS patient care. Hopefully the information shared will help you identify areas you and your health care team can explore.

______

Pearl 3: Achieve reasonable pain control

Unrelenting or severe pain is physically and mentally exhausting; it disrupts sleep, worsens mood and prevents physical activity. These are all important reasons to work on reasonable pain control. It may be impractical to eliminate pain completely, so the goal is to push pain into the background, to feel more in control and less frightened by the pain. This can be done by both reducing the pain and by learning to manage pain psychologically.

The first areas to consider when pain escalates are related to sleep, emotion and physical activity. Remember that restorative sleep improves generalized pain. It’s also important to note that emotional distress such as fear, depression, guilt or grief can dramatically escalate pain and reduce pain tolerance. With ME/CFS in particular, overextending physically, such as attempting vigorous or prolonged exercise, can raise pain levels both immediately and for days afterward. Inactivity, such as staying in bed too long, can also increase stiffness and overall achiness. So when pain increases, first reexamine sleep quality, emotional health and physical activity.

The decision to use pain medications, intermittently or persistently, should be made carefully with a qualified medical professional and adapted to each individual situation. Always be sure that appropriate investigations have been done to understand the cause and/or nature of the pain, so that treatment can be directed and maximally effective. Some focal pain conditions can be treated very effectively with high-tech procedures. Fortunately there are a growing number of effective pain-modulating drugs for the broad spectrum of conditions that can cause pain. Finding the right medication for your system and specific type of pain is key.

The goal is to keep pain in reasonable control with thoughtful prevention and treatment, and to seek more intensive treatment from a specialist when this is difficult to accomplish.

 

Pearl 4: Balance physical pacing with physical conditioning

The most effective intervention for ME/CFS is learning to control the type, duration and intensity of activity to avoid a “crash” or relapse. This is called pacing, or avoiding the push-crash cycle, and it works. Every patient should become familiar with his or her own threshold of relapse, even when it seems like a moving target, and learn to avoid triggering relapse symptoms by keeping activity within a safe level.

On the opposite end of the spectrum, activity limitation can cause diminished strength of both the skeletal muscles and the heart muscle. Without enough use, these muscles actually atrophy, getting smaller and weaker as time goes on. This global decline in strength and stamina is called physical deconditioning, and unfortunately it’s often accompanied by weight gain as well. Being deconditioned can worsen pain, fatigue, balance/ stability, orthostatic intolerance and sleep, not to mention self-esteem. A thorny problem, deconditioning is not easily repaired because initial attempts to exercise invariably result in a flare-up or relapse of ME/CFS symptoms.

These factors make both pacing and physical conditioning important for people with ME/CFS. The objective is to carefully and regularly engage in a controlled level of physical rehabilitation that won’t trigger relapse symptoms. The trick is figuring out how to do it—and especially how to adapt to a changing threshold of relapse. Tolerance for stretching, strengthening and cardiovascular exercise varies widely among patients with ME/CFS. It’s helpful to start with these guidelines: short duration (five minutes), low intensity (not strenuous), adequate rest/recovery periods (even a day or more) and utilization of a position (reclining or in water) that won’t worsen orthostatic intolerance if that’s an issue.

The process of learning to effectively pace activity while still minimizing deconditioning can be a frustrating challenge, but it’s an effective and self-empowering tool when it can be accomplished.

 

In part 1 of Pearls of Wisdom, Dr. Bateman dealt with building emotional resilience and achieving the most restorative sleep possible. Read it HERE.

In part 3 of Pearls of Wisdom – coming soon – Dr. Bateman will talk about the importance of identifying and treating comorbid conditions and we will make a single PDF of the entire 3-part blog available for free download. Stay tuned to the SMCI Research1st blog to get the next installment.

If you want to be notified when a new post is published, sign up to follow this blog on the top right.

 

Pearls of Wisdom from an ME/CFS Physician, part 1

February 9, 2015

By Dr. Lucinda BatemanBateman-4web

Lucinda Bateman, MD, specializes in the diagnosis and management of unexplained chronic fatigue, ME/CFS and fibromyalgia. She is the cofounder of OFFER, the Organization for Fatigue and Fibromyalgia Education and Research and has served on the Solve ME/CFS Initiative’s Board of Directors in the past. In 2015, Dr. Bateman will be the lead clinical investigator on the $500,000 research study awarded to SMCI from the Falk Medical Research Trust.  This award gives us the opportunity to further grow the SolveCFS BioBank™ and to extend the exciting results generated by SMCI funded investigator Dr. Patrick McGowan.

Learn more about the grant awarded to SMCI to fund this study HERE

Learn more about Dr McGowan’s SMCI funded research HERE

And access the paper describing his exciting results HERE

In this 3-part blog series, Dr. Bateman brings you some of her best advice on the treatment of ME/CFS, honed by her many years of caring for thousands of ME/CFS patients through the years…

__________

A nurse practitioner and fatigue clinic administrator are talking about burnout. The administrator groans, “I am so tired of slow scientific progress and of not being able to help my ME/CFS patients.” The nurse practitioner smiles and says, “I hear you, but I don’t agree that there is nothing that helps. Again and again, as I’ve become familiar with ME/CFS patients and their condition, they’ve told me they are so much better than they used to be!’”

This scenario reminds us of what we already know but sometimes forget: there are many ways to improve the situation of patients with ME/CFS, even if a cure is not yet within our reach.

True, there is marked heterogeneity (variety and individual differences) within the large group of people meeting the ME/CFS case definition. But when it comes to practical treatment advice, there are definitely some common truths or “pearls of wisdom” that seem to apply to almost everyone. The five “pearls” listed below have been used to teach medical professionals a simple plan of chronic management for ME/CFS patients. The plan provides a practical way to continually address ME/CFS symptoms that on the surface may appear complicated or daunting. This advice can improve daily function, at least until science identifies biomarkers and develops treatments directed at the physiology of the illness.

Obviously this plan of support is best implemented after other causes of chronic fatigue and pain have been evaluated and excluded, such as major organ disease or failure, metastatic cancer, autoimmune disease, severe eating disorders, substance abuse or mental illness. Epidemiology studies have shown that many patients debilitated by chronic fatigue have not consulted with a physician at all and, once properly evaluated, were sometimes found to have other more treatable illnesses.

The following pearls of wisdom aren’t listed in any particular order. Each of them are helpful in managing ME/CFS patient care. Hopefully they’ll help you identify areas you and your health care team can explore.

 

Pearl 1: Build emotional resilience

From day one of a ME/CFS diagnosis, it’s bad news. People around an individual with ME/CFS may not understand the illness, how it feels or what to do about it. At first a ME/CFS patient might receive attention, but as months go by without the kind of physical improvement people expect, those who once offered support may disappear. The ongoing physical limitations are accompanied by ongoing emotional trials. An acute illness is definitely traumatic, but most can muster a good fight while actively seeking a diagnosis and some type of rescue care. It’s living with the “C” in ME/CFS that really gets old.

ME/CFS can be especially punishing compared to other chronic illness. Because the symptoms are difficult to measure or prove clinically, they may be met with doubt or disapproval by those whose support is needed most. Because ME/CFS follows a relapsing and remitting pattern, in addition to feeling limited most of the time, patients can’t predict when they’ll feel even moderately better or worse. Because of the characteristic post-exertional symptoms of ME/CFS, an honest effort to function or simply have a little fun is often punished mercilessly by a relapse of pain, fatigue and brain fog. There are innumerable personal losses in the present and potential losses projected far into the future. Focusing on the loss can lead to a downward spiral that can impact life in very tangible ways.

In order to thrive, anyone living with ME/CFS must repeatedly rejuvenate the will to live and to find joy in living, even while chronically ill. It can be done! No one and no disease can take away the freedom to choose how to respond to a difficult situation.

ME/CFS patients need support in the form of strong advocates and cheerleaders when the going gets tough. Patients with a good support system in place do better over the long term because having advocates and cheerleaders builds up their emotional resilience and helps them to develop insight. This kind of support also helps them learn how to get out of an emotional slump, calm paralyzing fears, and to get back up and take one step forward. It’s important for them to cultivate the resources needed—among family, friends, counselors and medical providers—to stay as positive as possible.

Remember that much of what is known about ME/CFS physiology is centered in the brain, and the brain responds strongly to the mind. Emotional resilience can help lead to physical resilience.

 

Pearl 2: Achieve the most restorative sleep possible

ME/CFS patients usually agree the better they sleep, the better they feel and function. The trick is figuring out how to accomplish this, and the solutions definitely vary by patient.

Improved sleep immediately helps not only fatigue, but pain as well, and it probably improves cognition, mood, headaches and immune function to some degree. Natural sleep is always best, but the unfortunate fact is that most ME/CFS patients struggle with chronically disrupted and unrefreshing sleep that’s not easily fixed. There is no doubt that left untreated, even for a few days, sleep disruption worsens most aspects of ME/CFS.

Unfortunately there’s no perfect remedy for sleep. Practicing good sleep hygiene—such as consistent bedtimes and reducing caffeine intake—is imperative, but often not enough. Even the best of medications used for sleep have modest success, and some may even have adverse effects that can actually make sleep less restorative.

Sleep medications may change the architecture of sleep, alter daytime cognition or worsen fatigue, so they should be used in the lowest effective doses and, as much as possible, directed at the cause(s) of sleep disturbance. It may be useful to undergo polysomnography (a sleep study) if single drugs or low doses are ineffective.

If medication is necessary, it may be helpful for your health care professional to choose one that also treats other symptoms you may have. For example, while primarily improving sleep, drugs like Lyrica (pregabalin) or Neurontin (gabapentin) may reduce pain, and Elavil (amitriptyline) may keep IBS symptoms in check.

Achieving restorative sleep is an ongoing mission, but one well worth the attention.

 

In part 2 of Pearls of Wisdom – coming soon – Dr. Bateman will talk about achieving reasonable pain control and balancing physical pacing with physical conditioning. Then in part 3, she’ll discuss the importance of identifying and treating co-morbid conditions. Stay tuned to the SMCI Research1st blog to get the next 2 installments.

If you want to be notified when a blog is published, sign up to follow this blog on the top right.

Wanted: Patient Participation in Quality of ME/CFS Medical Care Survey

January 23, 2015

checkboxThe Chronic Fatigue Syndrome Advisory Committee’s Centers of Excellence Working Group invites the participation of all ME/CFS patients, 18 years of age and older, worldwide, but particularly within the United States, to participate in an online survey the purpose of which is to determine the ease of patient access to ME/CFS Specialists and to assess the quality of medical care received by individuals with ME/CFS from all of their healthcare providers. While it is of primary importance to establish the quality of care received by patients on a country-by-country basis, the intent of this survey is to establish the need for improved care within the United States based upon the quality of their care when compared to that of other illnesses within the United States, and based upon the comparison of their care to that received elsewhere in the world. The more robust the patient participation in this survey, the more significant the data and the more convincing the results drawn from it will be. We are hoping to obtain a minimum of 1,000 respondents in the United States. If you know ME/CFS patients, please encourage their participation. The results of this survey will inform us of the magnitude of need for ME/CFS Centers of Excellence, the services they should provide, and where they should be located.

This online survey is anonymous. Participant identity will not be revealed. Patients will be asked about their experiences with: access to ME/CFS specialists, barriers to access to ME/CFS specialists, the quality of care they have received from ME/CFS specialists, and the quality of care they have received from healthcare providers who are not ME/CFS specialists.

Patients will be asked to provide information, anonymously, about their current living circumstances (such as age, gender, and employment status), their ME/CFS diagnosis, ability to perform tasks of daily living, and illness onset characteristics. Patients will be provided with an opportunity to describe their medical care in their own words.

SMCI is pleased to share this information in order to garner as wide a response as possible.

To access the survey please follow the link:
https://redcap.is.depaul.edu/surveys/?s=wGI2stCALK

Download a PDF of this information and share the information with others: MECFS_Patient_Quality_of_Medical_Care_Survey

Public Release of the IOM ME/CFS Study February 10

January 23, 2015

The Institute of Medicine’s Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will hold a public release event for its consensus report on February 10th, 2015 from 11:00 am-12:00 pm EST at the Keck Center of the National Academies in Washington, D.C.  (500 Fifth Street NW, Washington, DC).

IOM_Meeting
Interested individuals will be able to attend the public release event in person or virtually via webcast. Persons who plan on attending the meeting in person are requested to register in advance prior to February 5, 2015. Registration for persons attending the meeting in person will be open until seating capacity of the conference room is reached. All participants may participate via webcast. A link for the webcast will be available on the public release webpage shortly before the event begins at 11:00 a.m. on February 10, 2015.

The public will be able to submit questions online, and a PowerPoint will be available at that time.

A PDF of the report will be available for free download on the event webpage beginning at 11 AM.
For more details of the event please visit the public release webpage

http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2015-FEB-10.aspx

 

We first brought you news of the IOM Committee’s charge in October of 2013 and have posted information about it to our blog routinely in the months since (Access all our posts on the IOM HERE). The process has been highly scrutinized and widely debated, but SMCI has remained cautiously optimistic as the committee has held public meetings and worked privately. After 16 months of watching and waiting, the committee’s report is to be released a month earlier than originally expected. (View the committee roster HERE.)

We will bring you news of the report’s details soon after its release. If you have not already, sign up to follow this blog and receive an email notification the day a post is published, you can do so today by entering your email on the “Blog Update Sign Up” on the top right of this page.

 

Research Digest – January 2015: High Interest in ME/CFS Shown in Journal Rankings

January 23, 2015

Patients often describe the relapsing of their disease symptoms following physical or mental activity as a “crash” or “hitting the wall”.  The biomedical field describes this characteristic and hallmark feature of ME/CFS as post-exertional malaise (PEM) – a term that grossly understates the debility that comes with this disease-defining symptom.

Deciphering PEM is a critically important area of research for ME/CFS; you can’t begin to fix a problem like post-exertional malaise until you can understand its underlying cause. If research can help our understanding of PEM we will move closer to mitigating its effects.

Despite the lack of gravity and specificity a term like “post exertional malaise” signifies, research into what PEM is and how to measure it has been some of the most important research conducted on ME/CFS. It has also been among the most popular. The Journal of Translational Medicine ranks its most highly accessed articles in three categories: “Top Cited Articles of 2014”, “Top Downloaded Articles of 2014” and the “Top Social Articles of 2014”. In this month’s Research Digest we take a look at some of the most highly accessed and shared studies, both of which dealt with PEM.

__________

First in downloads and 3rd in social shares was research conducted by Betsy Keller at Ithaca College titled, “Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO2peak indicates functional impairment.”  Keller used a 2-day cardiopulmonary exercise test (CPET) to show that physiological values in ME/CFS patients worsened on the second CPET, a phenomena unique to ME/CFS patients.

We featured Keller’s work in our May 2014 Research Digest
http://solvecfs.org/research-digest-may-2014-post-exertional-malaise/

You can also access it directly via the Journal of Translational Medicine here:
http://www.translational-medicine.com/content/12/1/104

 

The Dutch Vermeulen team’s article titled, “Decreased oxygen extraction during cardiopulmonary exercise test in patients with chronic fatigue syndrome” ranked second in the Journal of Translation Medicine among “Top Social Articles.”  They used CPET to show that oxygen extraction – or the ability of oxygen to be removed from the blood and used by tissues to support metabolism – was significantly lower in ME/CFS patients and could be a causal explanation for exercise intolerance in ME/CFS patients.

You can access the full text of this paper via The Journal of Translational Medicine here:
http://www.translational-medicine.com/content/12/1/20

 

It is interesting – and exciting – that papers on ME/CFS ranked so high in their review of 2014 downloads and social shares. The Solve ME/CFS Initiative funded some of the first PEM and CPET studies and continues to fund top research to understand and objectively measure PEM (http://solvecfs.org/deciphering-post-exertional-malaise/). We are certain that by doing so, we will be able to solve ME/CFS.

-#-

 

The Solve ME/CFS Initiative is taking strategic steps to speed up progress. Despite our modest budget, SMCI was the first organization to fund research into epidemiology, viral causes, immunology, neuroimaging, exercise physiology and the autonomic nervous system. big-donate-modifiedThis is made possible through the support of our donors. The investments made by those suffering with ME/CFS and their loved ones have fueled the Solve ME/CFS Initiative’s work. With your support, we are paving the road to objective diagnosis, treatment and a cure.