By K. Kimberly McCleary, President & CEO
The final version of the article was printed in the Oct. 2011 issue of JIM
On July 20, 2011, the Journal of Internal Medicine e-published ahead of print “Myalgic Encephalomyelitis: International Consensus Criteria.” The panel of authors, led by coeditors Bruce M. Carruthers, MD, CM, FRCP(C) and Marjorie I. van de Sande, BEd, GradDip Ed, includes 26 authors from Australia (3 authors), Belgium (1), Canada (4), Chile (1), Ireland (1), Italy (1), Japan (1), Korea (1), Latvia (1), New Zealand (1), Norway (1), the United Kingdom (2) and the United States (8). The paper specifically cites 123 publications to support its recommendations. [Update: The final version has been published in the October 2011 issue of the Journal of Internal Medicine and is available open access: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full]
Abstract:
The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3). Consequently, an International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented. Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer reviewed publications, diagnosed or treated approximately 50,000 ME patients, and several members coauthored previous criteria. The expertise and experience of the panel members as well as PubMed and other medical sources were utilized in a progression of suggestions/drafts/reviews/revisions. The authors, free of any sponsoring organization, achieved 100% consensus through a Delphi type process.
The scope of this paper is limited to criteria of ME and their application. Accordingly, the criteria reflect the complex symptomatology. Operational notes enhance clarity and specificity by providing guidance in the expression and interpretation of symptoms. Clinical and research application guidelines promote optimal recognition of ME by primary physicians and other health care providers, improve consistency of diagnoses in adult and paediatric patients internationally, and facilitate clearer identification of patients for research studies.
Past definitions for CFS and ME/CFS have been designed for either research or clinical settings, although there has been cross-over in how they were and are used. In contrast, the Journal of Internal Medicine paper states: “the primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low-threshold of fatigability and symptom flare in response to exertion. This will enable like patients to be diagnosed and enrolled in research studies internationally under a case definition that is acceptable to physicians and researchers around the world.”
New Criteria Overview
ME is described as “an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.”
Of particular note is that other definitions have established a minimum duration of illness (either four or six months). The new ME definition removes this requirement: “…diagnosis should be made when the clinician is satisfied that the patient has ME rather than having the diagnosis restricted by a specified time factor. Early diagnoses may elicit new insights into the early stages of pathogenesis; prompt treatment may lessen the severity and impact.” One of the questions arising from the new definition is whether individuals with a more transient illness will be considered to have ME.
Diagnosis begins with assessment of post-exertional neuroimmune exhaustion (PENE), rather than fatigue. “Post-exertional neuroimmune exhaustion is part of the body’s global protection response and is associated with dysfunction in the regulatory balance within and between the nervous, immune and endocrine systems, and cellular metabolism and ion transport. The normal activity/rest cycle, which involves performing an activity, becoming fatigued, and taking a rest whereby energy is restored, becomes dysfunctional.”
In addition to the required feature of PENE, the individual must have seven other symptoms: three that demonstrate neurological impairment; three that demonstrate immune impairment; and one that demonstrates energy production/transport impairment. These are described more fully below. The term “atypical ME” is used when an individual “meets criteria for post-exertional neuroimmune exhaustion but has two or less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases.”
The paper provides severity subgroups: “Symptom severity impact must result in a 50 percent or greater reduction of a patient’s premorbid activity level for a diagnosis of ME. Mild: approximately 50 percent reduction in activity; Moderate: mostly housebound; severe: mostly bedbound; and Very Severe: bedbound and dependent on help for physical functions.”
Special considerations are noted for making the diagnosis in the pediatric setting, including guidelines about distinguishing ME from school phobia.
The following co-occurring conditions are identified: “Fibromyalgia, myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis, Raynaud’s phenomenon, prolapsed mitral valve, migraines, allergies, multiple chemical sensitivities, Hashimoto’s thyroiditis, Sicca syndrome, reactive depression. Migraine and irritable bowel syndrome may precede ME but then become associated with it. Fibromyalgia overlaps.” From reading the text, it does not appear that this list is intended to represent the only comorbid conditions that should be considered. For instance, specific forms of orthostatic intolerance (postural orthostatic tachycardia syndrome and neurally mediated hypotension) are referenced in the description of energy production and transport impairments.
In addressing exclusionary conditions, the authors state, “…exclusion of alternate explanatory diagnoses is achieved by the patient’s history, physical examination, and laboratory/biomarker testing as indicated. It is possible to have more than one disease but it is important that each one is identified and treated. Primary psychiatric disorders, somatoform disorder and substance abuse are excluded. Paediatric: ‘primary’ school phobia.”
Symptom Clusters
As stated earlier, the central feature of ME under this definition is post-exertional neuroimmune exhaustion (PENE). To meet the criteria, an individual must have PENE, described in the following manner: “This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.
“Characteristics are:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.”
The individual must demonstrate neurological impairment by meeting a total of at least three symptoms from three of these four categories:
1. Neurocognitive impairment
a. Difficulty processing information: slowed thought, impaired concentration
b. Short-term memory loss
2. Pain
a. Headaches
b. Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is non-inflammatory in nature and often migrates.
3. Sleep disturbance
4. Neurosensory, perceptual and motor disurbances
a. Neurosensory and perceptual
b. Motor
The individual must demonstrate immunological impairment by meeting a total of at least three symptoms from three of these five categories:
1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion
2. Susceptibility to viral infections with prolonged recovery periods
3. Gastointestinal tract
4. Genitoruinary
5. Sensitivities to food, medications, odours or chemicals
The individual must have one of the following symptoms that demonstrate energy production/transport impairment:
1. Cardiovascular
2. Respiratory
3. Loss of thermostatic stability
4. Intolerance of extremes of temperature
Further descriptions of each of these symptom clusters are provided in Table 1 that accompanies the text. (Table 1 has been reproduced by the CFIDS Association of America under limited license from John Wiley & Sons, Inc., publisher of the Journal of Internal Medicine. Copyright to the original material and all other rights reserved by John Wiley & Sons, Inc.)
The authors also provide additional directives for applying these symptom lists in clinical settings vs. research settings. The panel is at work on Physicians Guidelines and an International Consensus Symptom Scale. They specifically state that only subjects who fully meet ME criteria should be included in epidemiological research.
What’s Next?
Acceptance for particular disease definitions may come by several different routes. The most common route is for an authoritative institution to lead and “sponsor” development, publication and circulation of a definition. The 1990 American College of Rheumatology criteria for fibromyalgia is one example. This ME publication was developed as an independent effort, free of sponsorship. The panel reflects diverse expertise and experience with CFS, ME/CFS and ME; however, none of the participants represent professional organizations, funding agencies or policy-making institutions like the National Institutes of Health and U.S. Centers for Disease Control & Prevention in the United States or the Medical Research Council in the United Kingdom. Such participation might have added “clout” that could influence more rapid acceptance and utilization at an institutional level, however it might have also resulted in a different product.
While it lacks the implied institutional endorsement of the 1994 criteria for CFS led by authors at the CDC, this consensus report has a major advantage over the 2003 Canadian clinical criteria for ME/CFS with its publication in a journal with wide circulation in the medical community. (The Journal of Internal Medicine has an impact factor of 5.935, compared to the now-defunct Journal of Chronic Fatigue Syndrome that was never linked to PubMed.) The version published electronically on July 20, 2011, is a provisional paper, with the final version due out in print later this year. It will be interesting to follow formal responses that may be generated through Letters to the Editor and other commentary and analyses, particularly by those who have worked on earlier case definition efforts for CFS, ME and ME/CFS (CFS/ME). The next meeting of the U.S. Department of Health and Human Services CFS Advisory Committee will be a potential venue for discussion of impacts on funding and policy (including Social Security disability), with a recommendation that the U.S. federal agencies adopt ME/CFS as a replacement for CFS still under review by the Secretary of Health and discussion of case definition a regular feature of agency reports and discussion.
It is hoped that this consensus report will be broadly viewed as a positive development in the effort to identify criteria that enhance patient care and research. The response so far reflects a mostly enthusiastic reception, although there is some disappointment about the lack of objective measures to support symptom criteria. The paper provides a theoretical construct, with no data provided to demonstrate whether application of this criteria set results in a more homogeneous patient population than other criteria. There is also some concern about the possibility that the following statement in the paper’s Conclusions might have the unintended effect of jeopardizing or impeding access to or payments from government and private insurance coverage systems that do not presently recognize ME: “Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.” In the United States, most systems (including Social Security) utilize the 1994 CFS definition by Fukuda et al. rather than the 2005 empiric definition by Reeves et al., but the ambiguity about which one constitutes the present “CDC definition” gives rise to concerns about the impact of this statement when applied in the medical-legal context.
The CFIDS Association considers the ME International Consensus Criteria to be an important publication with potentially far-reaching implications for research, policy and education. We are reviewing it closely and will be seeking input from our Scientific Advisory Board (three members of which are authors on the paper) and others about how these criteria might impact comparability with existing literature, funding, health care delivery, reimbursement, disability payments/applications, general awareness and understanding and a wide range of other practical issues.
Reference:
Myalgic Encephalomyelitis: International Consensus Criteria. Bruce M Carruthers, Marjorie I van de Sande, Kenny L De Meirleir, Nancy G Klimas, Gordon Broderick, Terry Mitchell, Don Staines, Peter Powles, Nigel Speight, Rosamund Vallings, Lucinda Bateman, Barbara Baumgarten-Austrheim, David S Bell, Nicoletta Carlo-Stella, John Chia, Austin Darragh, Daehyun Jo, Don Lewis, Alan R Light, Sonya Marshall-Gradisbik, Ismael Mena, Judy A Mikovits, Kunihisa Miwa, Modra Murovska, Martin L Pall, Staci Stevens. Journal of Internal Medicine. Accepted Article, July 20, 2011 doi: 10.1111/j.1365-2796.2011.02428.x (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full)
K. Kimberly McCleary has served as the Association’s chief staff executive since 1991.
Note: Post updated on July 27, 2011 to add link to Table 1 (http://www.research1st.com/wp-content/uploads/2011/07/Carruthers-JIM-Table-1.pdf) reproduced by the CFIDS Association of America under limited license from John Wiley & Sons, Inc., publisher of the Journal of Internal Medicine. Copyright to the original material and all other rights reserved by John Wiley & Sons, Inc.
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At this point, I am missing one of the things needed. Although, just a year ago, I had them all. The one I am missing is under immunological. Instead of more infections, up until 2009, I went five years with no infections. I have two in that category, missing just one. So I guess at this time, I am atypical. I don’t have sore throats any more. And it was three years into my illness before I started having them. You know, putting in high titers for _________ and lists all the many viruses / bacteria associated would have been a good one to put there.
Also, I don’t like word “exhaustion”. Healthy people get exhausted from exertion, such as running a marathon. “I’m just exhausted,” is commonly heard, with no reference to illness. However, “fatigue” is a symptom of illness, such as AIDS, COPD, and others. Fatigue is what doctors put down as a symptom that something is wrong. As much as I don’t like “fatigue” because it’s original medical meaning has been diluted, I don’t like exhaustion even more. I do like “post exertional symptom exacerbation” or “post exertion symptom relapse”. And you can still throw in the “neuroimmune” if you want.
All this to say, I am most happy that a guideline for doctors will be coming and a treatment plan. I think doctors wish they had something to go by, some guidance, something they can do for these sick people. Putting it in checklist form with an algorithm of “if this” then “do that” will be welcome by doctors who are frustrated by the illness, the patients and the lack of scientific guidance.
In this set of criteria, there are no temporal requirements established for the occurrence/presence of symptoms, so it is somewhat unclear whether the required symptoms must all be present at the time of assessment, or if they can be reported to have been present in the past. This interpretation will have important implications for the application of the criteria, especially in the research setting. The paper provides the following guidance for applying the criteria in a clinical setting: “Determine whether symptom cluster patterns are congruent with those expected from dysfunction of an underlying causal system. Symptoms interact dynamically within a stable cluster because they share the same deep causal roots. Patients’ contextual observations are essential in determining the expression of interaction of symptom patterns and severity of their impact.”
In their meeting abstract, “Detection of MLV-like gag sequences in blood samples from a New York state CFS cohort,” Maureen Hanson and David S. Bell included a group rarely seen in ME/CFS research – so-called “recovered” patients. These researchers very specifically pointed out that although “recovered” the SF-36 scores of recovered patients were substantially below that of the healthy group.
This indicates that disease stage counts and partial recovery doesn’t necessarily mean going back pre-morbid levels – at least for adults.
I too find that I don’t tend to come down with flus etc. I’ve always thought that it was because my immune system is on ‘high alert’ all the time.
I’ve also found that my post-exertional symptoms are more likely to be triggered by non-physical stressors than by physical ones. A big argument with someone can make me feel much more tired for longer than, say, a long walk.
Same thing here. I used to get sick rarely – maybe once every year or two – but since the CFS symptoms started 5 years ago, I can’t recall having had any clear-cut colds or flus at all. Even when there’s a virus going around the house (and sometimes when there isn’t), I might get mild symptoms for 24-48 hours, but nothing I can even be sure is an illness vs. just random mild allergies or similar.
I too have very few episodes of “catching” illnesses from others and I was exposed to classrooms full of kids. I was the one who missed the virus going around. I have always said my immune system is hyper instead of hypo. And it has taken me years to realize that mental stress makes me sicker quicker and longer than physical. I have had ME for over 20 years and it still continues to change. Certain symptoms that were once a daily issue no longer bother me and some are there but are evident less often and some I have learned ways to manage (sleep disturbance for example). I am doing well right now but have been in this place before only to relapse. Crossing that line is the balancing act of my life.
I have had this illness now for about 25 years. I have found that indeed non-physical stress is most debilitation. Just fyi. I am getting much better sleep since throwing my TV in the dumpster. Even positive stress, like excitement, brings it on for me. I would assess my physical ability at about 5% of normal. I sure hope somebody finds a cure soon. Don’t know how much longer I can survive.
Same here, Hans! The emotional stress/excitement seems to make mine much worse. Great Love to you!
I know how you feel about giving up. There will be news within the year so hang on. Kasha
Hans you sound like a mirror image of me. I have been ill for 35 years. I am functioning probably at about 1/4 of what I was able to do when still working. I taught young children for 26 years…incredible germ pool. Yes, family events, even when pleasant and anticipated, result in days of crashing rest. When I allow my body the time to have this rest, it is at first rather frightening, sort of a feeling of hanging onto a tree branch after falling off a cliff…You struggle to get a footing, you can’t feel the ground below you, the dizzying heights….it is a profound whole body experience of disorientation and imbalance. There are times when I am ok with walking through a store, and there are times I have an instinctive red flag pop up, warning me off. When I disregard that red flag, I am completely overwhelmed by the sensory overload in the store….it is dreadful, so much so that I have walked through a grocery with earplugs in, and sunglasses on ..and I cannot wait to get out.
I received the best rest and recuperation with TV completely off, room very cool, diffused light during day and complete blackness at night, continual fluids, light food, really how one would recover from a flu or terrible cold…..yet I had no such symptoms of either. Only the complete and devestating mind-numbing exhaustion. I did this for about 4 months last fall. It took me 6 months to memorize my new cell phone number. That’s something I am sure many of you out there can relate to.
Dear Hans. I was diganosed with this about 17 yrs ago, although, I believe I’ve had for more like 25+ yrs, now knowing all the symptoms & how they manifest themselves throughout this poor, tired, handing on by a thread…body.
I have been bedbound for 28 months in February. The summer of 2009, I completed my 5th year of PRO Drag Racing, every year finishing in the top 15, beating the “big boys” who’d been racing 30+ yrs.
We own a 200+ yr old home, which we’ll be FOREVER restoring…and have 6+ acres, which needs total overhaul…hundreds of trees to be cleared…and I USED to have 4 beautiful gardens……NONE of which exist any longer, as I WAS ALWAYS THE ONE who mowed all our lawns, did all the garden work…..shoveled our 1/10 mile long STEEP driveway, every quare inch of it for the first 13 years we lived here…I wish I could tell you the quare footage.WOW just figured it out, that’s 6,336 square feet of space! And getting 2-3 feet of know here is NOT a rare thing! By the time my husband would get home from work, the driveway, including the parking area at the top, which is not in this GRAND number….would be cleared to the ground, so he wouldn’t have any problem making up the steep incline, which would leave him a long, cold, dangerous hike from the mid-portion of our drive. I also kept our home, and the 2 previous, SPOTLESS, ORGANIZED, made nice dinners….clean kitchen every night….vacuumed every single day ( old homes make their own dust & junk!) AND held down a full time job showing Million $$ Frank Llyod Wright homes….or Pro Drag raced, around 35 hours every weekend, which is, IMHO, one of the MOST GRUELING sports there is!
Now I lay in bed and look at my walls & ceiling. I can’t get rid of the tv, I’d go INSANE if I didn’t hear voices of SOME SORT…..but I HAVE tremendously changed WHAT I ALLOW MYSELF TO WATCH…calm, soothing, heartwarming, moral shows. I also listen to all my fav music on my Nano, as I used to be a Professional Singer as well.
Other than that, all I’m really able to do it crochet, which I’ve surpassed the highest level in grade….and make one of a kind masterpieces, which are usually gifts for family or the very few close friends I have left, as I could NEVER get any amount of money for the time & KILLER effort it takes me to complete any project.
I DO NOT KNOW HOW TO BE THIS PERSON. I JUST DON’T.
I’VE HAD A SORE THROAT FOR, GOSH, OVER 15 YRS….MY GLANDS ARE ALWAYS SWOLLEN. I GET EVERY SINGLE BUG MY HUSBAND WALKS IN THE DOOR WITH. AND, IF HE GETS SICK, IT’S LIKE FOR A FEW HOURS….BUT A FEW WEEKS FOR ME.
For the past 2+ yrs, I’ve just been getting weaker with each illness, and never recovering. I was diagnosed with COPD 2 ys ago…that hasn’t helped.
I haven’t slept more than an hour at BEST for over 10 yrs. I wake up constantly, having to switch sides due to the terrifying pain on either hip, but especially my lower back.
I feel like I’m losing my mind…I used to have the sharpest memory EVER…stunning people with what I’d whip out of my brain….but now…I’m not even gonna go there. It’s just sad. TRULY SAD.
My insides are so messed up with colitis, IBS, Croan’s….too many dr’s and too many opinions….all I know, is my attacks have nearly killed me for over 20 yrs.
I lost all my children to miscarriage the 1st of our now 27th yr of marriage. ALL I EVER WANTED WAS TO BE A MOTHER. But I was ALWAYS SICK in one way shape or form. I learned how to hide it, BEYOND COMPREHENSION…TOO WELL, now that I reflect… to the point that people , especially DOCTORS just didn’t take anything very seriously, unless I was rushed by Ambulance with no Palpable BP…sometimes for hours, depsite all their “efforts”.
I’ve had 5 MAJOR surgeries, and they CLEARLY form a timeline of my marked decline since the age of 9. I’ll be 47 in March and I feel like I’m 65 at least.
It’s been so long in bed now, that it’s hard to HOPE…put any faith in Dr’s…I’m going to sell my race car soon…something I NEVER thought I’d EVER part with…
What I DO KNOW IS THIS..if I don’t find the RIGHT DR (S) SOON & VERY SOON, I’m not long for this world. I’m ready to meet my Savior. I don’t want to leave my husband…not at all. But I AM ready for PEACE.
I cannot FATHOM IT ANYMORE, and for me, THAT’S A CRIME.
The ignorance of dr’s concerning this WRETCHED,DEVISTATING, LIFE-STEALING, MEMORY ROBBING, CRIPPLING, DIBILITATING, ROMANCE/INTAMCY- STEALING, MURDEROUS DISEASE…….is one of the most DEPLORABLE THINGS IN THE MEDICAL COMMUNITY TODAY. When I was diagnosed 17 yrs ago, it was 6 weeks after a VERY RADICAL, NOT NECESSARY, COMPLICATION RIDDLED COMPLETE HYSTERECTOMY. By the time I got to my reg Dr 6 weeks out, too weak to walk on my own, shower on my own, lift my head off the back of the recliner to watch the tv….she absolutely FLIPPED OUT AFTER 3 ROUNDS OF REPEATED BLOOD WORK, AS MY TITER LEVELS WERE COMPLETELY THROUGH THE ROOF. She told me, I don’t know how you’re CONSCIOUS!!
I’m very tired now. I have a huge dr app’t tomorrow with a plastic surgeon about serious burn damage incurred 5 months ago, after my O2 machine got ignited (due to malfunction) and lit my face on fire…and also to have a seriously needed breast reduction, as my spine is deteriorating and I can no longer ( for many yrs now) tolerate the weight, pulling of all connected muscles, with EVEY SINGLE MOVE I MAKE…as my FibroM has gone through the HEMISPHERE since the burn accident. My face was LITERALLY ON FIRE…and I inhaled the flames for at least a minute.
I just wanted to put my arm around you through this connection, share your frustrations, pain, worry, disappointments…as I KNOW how horrid is has become, to daily be the ONLY ONE WHO REALLY GETS IT, THAT..I’M NOT LONG FOR THIS EARTH, IF SOMEONE DOESN’T FIGURE SOMETHING HUGE OUT REAL FAST.
I will begin praying for you. It’s the only thing I know works.
Most sincerely, Willow Sue.
I can sugest NAET.
I know people that have been helped with all kinds of untreatable illnesses.
I relate to your response. I can become fatigued after a lengthy conversation or sitting&reading.
Same here. I didn’t have a cold or flu at all for the first few years of having ME and still don’t get as many as other people some years on. This is despite my husband and children still getting the usual amount of bugs and viruses. So I think they’re wrong on that count and am relieved to find that so many people have the same experience as me.
This is the best definition of Myalgic Encephalomyelitis that I have seen, by a country mile. It has the potential to clear the confusion surrounding this neuro-immune disease, sort the sheep from the goats for research purposes, and educate our medics about this all to common illness.
It is a draft. There is room for amendments. Bravo to the International Consensus Panel!
Very well said Jane! You wrote what I thought, only you said it better. I am so excited about this step forward and that all the contributors to the paper were just sincere medics desiring to get to the bottom of such an horrid illness. It actually brought tears of gratitude and joy to me. Lets hope future generations won’t need to endure 5-30 years or more of incapacitation, misunderstanding and alienation. Even my third year was unbearable, totally bedridden and such extreme pain. As a patient it is not easy to accept that this is my life. Thank you all!
Lucy,
You spoke of having difficulty accepting that “this is my life”. Isn’t that the hardest part of all of it, the mental, emotional toll this crushing illness produces?
I find the mental struggle to deal with it, and whatever the rest of our world is at the moment, the biggest hurdle.
I learned from a physical therapist about what he called The Mind Game.
It seems too elementary for us, but I find it works. Phsyical therapists have helped me a lot with this. They applaud your least little success, and help you MODIFY your activity so it works for you.
Of course this is a very individual response, you have to develop your own set of skills with ‘the mind game’ of approaching TODAY’S challenges…..only today’s challenges.
“The paper provides a theoretical construct, with no data provided to demonstrate whether application of this criteria set results in a more homogeneous patient population than other criteria.”
I think that’s a very important point. Ultimately a case definition like this will prove its worth if it can show clear differentiation (eg biomarkers, severtiy levels) between patients who meet the definiton and those that fall short (while still meeting broader CFS definitions such as Oxford and Fukuda).
As with one of the people to first reply, I too rarely have problems with viral infections. This is especially noticeable when everyone else in the household has The Flu or a cold; and, on the rare occasion when I do catch what is going around, the course of the virus is noticeably milder and significantly faster. It was always my understanding that people with ME have “up-regulated” immune systems. Is this no longer the prevailing view?
The term “immune dysfunction” in CFIDS refers to the findings that immune problems can take the form of suppression (as with natural killer cells that are fewer in number and less potent than “normal”) or upregulation (as with proinflammatory cytokines that produced in greater quantities). There seem to be subsets of patients who either are susceptible to every infection that goes through their household or community and others who report not catching the same things other family members/close contacts do.
I have had C.F.I.D.S. for 20 some years & catch everything that is going around & then some. It seems my immune system is pretty much wiped out. I can’t see how this criteria will help differiantiat between the two. It dose seen like a step in the right direction.
(there goes the thought process) I had a specific point when I started this cament
As the previous poster mentioned, there are subgroups and one are those with chronic neuroimmune upregulation (am in the same boat) which could also be a stage.
I agree with Kim McCleary that the diagnosis does not deal adequately with temporal aspects of the symptoms. I have had CFS since 1984. Because of what I’ve learned in the interim, many of the symptoms I’ve had over the years are now lessened or even almost gone. But if I let myself go and, for example, stopped taking all my medications, resumed my pre-illness activities, exposed myself to fragrances, smoke and many cleaning products, and ate whatever I wanted, I am confident all the symptoms would reappear and I would be as sick again as I was at my worst. I might even die. Further, some of my symptoms did not appear until years after I became ill. One, sleep disturbance, started two years after I got sick and continues today.
Still, the diagnostic criteria developed by this group captures better than anything I have seen previously the fullness of what I have. I am grateful for the time they have spent and the seriousness with which they are taking the disease.
Hopefully the International Consensus Symptom Scale being developed by the same panel will provide some greater clarity. It’s not clear whether the PENE must be present at the beginning of the illness, or whether it can come later (as some individuals with CFS and/or ME/CFS report). Consider the different results of assessment depending on how the questions about these symptoms are asked. For instance, “Have you ever had symptom Y?” vs. “Are you currently experiencing symptom Y?” or “Have you, at any time since the onset of PENE, experienced symptom Y?” vs. “Have you, at any time since the onset of PENE, experienced symptom Y to the extent it impacted on your activities of daily living?”
That is such a vital point. If asked to compile a list of the different symptoms that have plagued me at times over the last 20 years it would be a much much different list than one of the symptoms I experienced yesterday.
Thanks in particular for outline past efforts and the steps the definition needs to be come legitimized. This is something the CAA with its long history with this disorder does very well. Good point that the definition could use ‘buy-in’ from prominent institutions. I imagine that will be a key point and it will presumably need buy-in from prominent institutions within the CFS community such as the IACFS/ME and the CAA.
I felt the fact that a wide variety of researchers and physicians got on board with this name change/definition and got it published in this journal was quite significant.
I have experienced both in the course of my illness. For the first few years, I never caught anything that was going around. (My CFS wasn’t as bad as some during that period). Since a severe relapse two years ago, I catch everything that goes around. So I agree with Kim.
I am very concerned about how the NIH, CDC, Social Security, health and disability insurance companies, and physicians’ associations will view this definition. Will they take this as a starting point to develop consensus? Or will they reject it out of hand? And how does one interpret research done on Fukuda populations (as one example) within the boundaries of this new criteria? How applicable will results be across populations?
I hope stakeholders can see this document as a starting point, and that meaningful and substantive debate can proceed. If anyone gets their backs up and starts taking potshots at these criteria, it can only impede progress. I am anxious to hear discussion of this at the next CFSAC meeting!
The following passage upsets me for several reasons- “Symptom severity impact must result in a 50 percent or greater reduction of a patient’s premorbid activity level for a diagnosis of ME. Mild: approximately 50 percent reduction in activity; Moderate: mostly housebound; severe: mostly bedbound; and Very Severe: bedbound and dependent on help for physical functions.”
I’ve never seen a severity scale that I agreed with and the above is a prime example of why more patients should have been included in this process- Approximately 50% reduction in activity is ‘mild’ while being mostly housebound is only ‘moderate’? I am completely housebound and while not bedbound, the only thing I’m able to do, day in and day out, is to move from one stationary location to another, chair to couch, couch to porch, porch to chair, etc. I’m not even able to cook myself meals unaided yet I’m only ‘moderately’ affected? Forget driving a car, it’s too difficult for me to even ride in a car due to the stops, starts, bumps, etc. If I suffered from any other disease on the planet I’d be exceedingly, severely affected and researchers need to wake up and realize that what they write has consequences on how the disease is percieved, just like the original ‘CFS’ authors failed to realize how such a name would trivialize the disease for the next few decades. Whoops, sorry about that, better luck next time, huh!
For example the 6 minute walk test averages of PACE trial participants were well below 400m. In heart disease studies a similar score would actually indicate that a patient was ready for a heart transplant.(1)
If (since) researchers and scientists are habitually unable to realize the consequences of their actions and use appropriate language as a result then substantial patient participation needs to be mandatory in matters such as these, not just a token patient advocate who can be ignored at will. The CFIDS Association, ME Association, 25% Group, etc. should all have been a part of this from the get go. I’d like researchers to see how ‘moderately affected’ they are when they’re not able to leave their house or even cook a full meal for themselves over the next several decades. Look at the thesaurus synonyms for ‘moderately’- more or less, so-so, kind of, sort of, etc. What? It seems like there could be a ‘substantially’ or ‘markedly’ or ‘significantly’ affected category below the ‘moderate’ category or something similar. Also, the two ‘severely’ and ‘very severely affected’ cagegories seem to be unnecessary distinctions, if someone is bedbound they are bedbound.
Thanks to the researchers for doing this, but descriptions have impacts and ‘moderately affected’ doesn’t cut it as to how much of someone’s functionality is missing when they are physically unable to leave the house. Please include more patients next time, isn’t that (hopefully) the trend across all medicine? If other scientists poo-poo you for including too many patients in your panel, tell ‘em to stick it where the sun don’t shine because the patient is who the whole endeavour should be about to begin with! Undertaking an entire process without including the very individuals who the whole thing is for, or at least should be for? Give me a break!
mod·er·ate (mdr-t)
adj.
1. Being within reasonable limits; not excessive or extreme: a moderate price.
http://www.thefreedictionary.com/moderately
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1. “CONCLUSION: The 6-minute walk test is a useful tool in the assessment of when to list patients for transplantation. A 6-minute walk test result of less than 400 meters appears to be a reasonable marker with regard to when a patient should be listed for transplantation.”
Kadikar A, Maurer J, Kesten S. The six-minute walk test: a guide to assessment for lung transplantation.
J Heart Lung Transplant. 1997 Mar;16(3):313-9.
While I think it’s good that researchers are attempting to make some progress on the puzzle that is called CFS, CFIDS, or ME this consensus’ definition of impairment could seriously damage patients. I agree with John: their definition of moderate is hardly appropriate. I have two recognized illnesses that will be fatal – moderate pulmonary arterial hypertension and stage 3 congestive heart failure – in addition to all of the CFS symptoms (diagnosed in 1995) plus some other recognized diseases and I am disabled. Yet I do go grocery shopping and to doctors’ appointments, so strictly speaking I am not housebound. Yet there is no way I could work even a few hours a week due to pain, fatigue and cognitive problems. I would be doing much better if I did not have to shop and get myself to appointments, but there is no one to do these things for me so I have to do them myself. And this definition would make me, what? mildly impaired?!? I can’t even do a 6 minute walk test! Good grief! This consensus sounds like regress, not progress.
I agree with John and Nikki, but I would also object to the definition for “mildly affected” — which is where I would probably fall on this scale. Ridiculous!
I have to take muscle relaxants and pain medication ’round the clock, or I cannot function at all. There is almost never a night that I can manage to sleep through the night, and that’s WITH sleep medication. I need at least 10 hours’ sleep to avoid developing sore throats and worsened swollen glands; and if I overdo it in the least, I need 12 hours sleep until I finally begin to recover. That doesn’t leave a lot of time for a life; indeed, the life I lead is a very pale shadow of what it once was.
I cannot work because it’s too long a period of cognitive activity and exertion. Worry/stress ruins me for days. I cannot think straight, organize my way out of a paper bag, or remember things I should be able to easily recall — like what I’ve just read, the name of someone I’ve known for years, titles, words, what my husband said last night…. I cannot play with my grandchildren for very long, or very actively. If I exert myself to any degree, I’ll have the pins knocked out from under me for weeks. Many, many days just showering, putting on some make-up and styling my hair leaves me spent for hours.
Any healthy person would consider their lives ruined if they had to live like this. Yet I am “mildly” affected by ME?!
Of course I know that I am better off than many ME patients. When I’m feeling relatively OK, I CAN attend church, go to Bible study, have lunch with a friend, or pick up some groceries on my own. I CAN cook a meal if my husband will clean up afterward. I CAN do a load or two of laundry. I CAN walk my dog around the block.
But a healthy person would be able to do ALL those things in a single day without breaking a sweat. I would need the entire week, and I’d have to pace myself very carefully. I cannot view that as “mild” by any stretch of the imagination, and neither would anyone who still has her health.
BRAVO CHRISTINA! Very similar to myself these last 10 yrs. There are
things I do because I have to, but if I am really ill, it just has to wait! There have been days I can go for a longer walk but many more that I am so weak & shaky, I can barely make it across the room. Showers make me so weak that sometimes I have to rest before I can even dry myself. There is so much lack of motivation & also serious depression that I can’t cook or have people over the way I did, let alone keep up the housework! And that means losing the company of friends & family because noone can possibly relate to how this illness affects us! So difficult knowing that people look at this person who presents as healthy-why don’t you work? If you do get out they have no idea about the exhaustion that follows, how we can’t commit until the very day so we will know we feel up to any thing but bed & hiding away. Husbands can’t really get it, poor dears & I just want a fulltime cook to make sure I get regular, healthy meals!! Plus a top to bottom cleaning for my house now & then! Wouldn’t that be great? Tangible symptoms plus very obvious ”sick” problems- fall to the floor in a dead faint & see how fast that gets you to hospital hooked up to monitors, CT scans,MRI etc. Surely you had a heart attack!! No just a wee rest & a few regular meals & some attention of course. But you did seem to be “really” SICK! HANG IN THERE, EVERYONE!
NOTE: I am writing this at one A.M. I function much better after midnight & hate when I have to get up around noon because it takes 12 hrs to feel anything close to normal.
Christine,
Thank you for describing my experiences to a “T”. Amazing, I am relieved to read what your daily life CAN be, with all sorts of support systems in place. So, NO, we are certainly not ‘mildly affected’ it is rather profound.
I too am able to do some of the things you described, but that is with someone else doing the driving, the pushing of grocery cart, bringing in the groceries, managing household papers.
John, I so totally agree with everything you said. I am too sick right now to type, sit-up, and think clearly about what I want to say. So, I can only try a little. I’ve been sick since I was in grade school. I am nearly 64 and completely worn out. I went to a doctor appointment earlier this week, which required a 2 1/2 drive from home,(my disabled husband had to drive me), and I’ve been bedridden since. I’m only able to to get up for the bathroom. I haven’t eaten yet today because I’m too nauseated by the headaches that have been severe lately (the symptoms vary for me), causing vertigo. I haven’t been able to sleep for years. I get about 14 minutes of deep sleep a night, regardless of how long I sleep. I’m so sick of doctors, stupid people who won’t believe me, my family included, and the economic impact this has had on my husband and me. My brain is foggy and I’m forgetting grammar and I’m still fighting but don’t know for how much longer. We have no help.
I spend 51% of my net income on medical
Carol You sound like me;I’m 66. I am convinced I must & will get the mercury amalgums removed from my teeth. I have had about 12 since childhood.
Agreement with John, Nikki, Christina, and others who 1) Recognize that we are ill, but 2) that we should not jump on a definition of the illness if it is not right. I doubt that we will have an easier time of explaining to people around us what most on this board simply understand from each others experience. For instance, by my count, most here experience having fewer viral infections since CFS–certainly my case–most do not agree with the characterization of “post-exertional exhaustion” because it is not just quite like that, but rather (my case) that when we have to do something that require sustained activity and attention, then bad things tend to happen. Most here have a shared experience of symptoms and the problems we face with surviving with them and the lack of understanding of them. But, not all have the same experiences and that does not mean lack of illness, but it may mean that we do no service to the cause of finding a cure by lumping everyone together. Personally, I simply go with “I have illness X” and it has “these and these symptoms”, which I know I share with a number of other people.
I developed it in 1989; I went through all of the versions here-. Other people have always been my biggest difficulty; because I only used to appear ‘out’in the world, when I was ‘well’ and had saved up enough energy; I know I was labelled as weird and anti social on many occasions and was ostracised because of how I had to live and handle M.E. people still judge me in the village I live in, on those years: Unable to put myself out for others – so I was considered extrememly self centred- I only had barely enough for myself and children ( single parent)
I am particularly interested to see cystitis included as that was the one that appeared after about 5 years and was particularly weird as it was not connected with ME.,and the one which caused a doctor to tell me to ‘get on with my life’, which actually of course was what I was doing.
.
I walk maybe 5 miles, but the exhaustion I get still goes into painful; My mental stamina has grown considerably and I have built up a business to support myself-my partner did not know me when very ‘ill’ or ‘ill’ and really does not understand ‘exhausted’. Vocabulary is difficult because all the words used get tagged with society’s meanings. I say I am really tired, and have only just realised that, still, I have been misunderstood. I have now explained that when I say this, I generally mean that my battery has completely run downand the alternator is not working! ie there is no regeneration of new energy. I am well and taking on new challenges, but the one in these last couple of years that has got me back with symptoms again looking after a difficult child- one day is exhaustion with a happy child; after a few days with a difficult child I really am desperate; the draining feeling of complete depletion of energy- I find that scarey, as it takes me back to the time that lasted weeks before getting back to taking baby steps. Now I get really emotionally upset and anxious when the symptoms return and I am suddenly floundering in the middle of my ‘normal’ life .
However, in general I am strong healthy- it is I have embarked on building a healthy active life with new activities building- distance walking, horse riding cycling; But If one extra thing happens and I am caught out with nothing in the tank, I am exposed again!
I can really relate to your empty tank comment. Tried to walk too far today (25 minutes instead of 15) and almost fainted. Discouraging.
I also used to wonder: ‘Will I get better before I get old?” The challenges of re entering the world almost 75%- a bit weird cos I’m learning things I shouldve learned 20 years ago. On the whole I celebrate being so well, but I still have to measure what I take on and still cannot know whther what I can do one day and endure, will be what I can do on another without cracking and having to retreat into monastic seclusion.
I am glad to read that others are as concerned as I am about the immune system qualification for a diagnosis of ME.
I am in the category of not catching anything. I havent even had a cold in years despite family members coughing and spluttering around me. This despite the fact that I also have nuetropenia ..not severe currently at 1.2 Enough to be monitored. I do have other symptoms from that category, particularly if I stop my diet etc.
I am another that does not ‘catch’ common viral illnesses. I have heard others say that they used to be the same, but now they catch everything that is going. This is not a problem. The only absolute requirement is PENE, all the other catagories are one symptom out of each group. I quote:
“A patient will meet the criteria for post-exertional neuroimmune exhaustion (A), at least one symptom from three neurological impairment categories (B), at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and at least one symptom from energy metabolism/transport impairments (D).”
Isn’t it good to get away from the misleading terms “malaise” (understatement of the century) and “CFS”?
Refreshing, hopeful to say the least. Have just read through this quickly as I was so excited to see this finally happening. Prior to this, the only set of criteria that I have read that makes any sense to me is that published by Dr. Byron Hyde in his excellent little book “Missed Diagnoses.” This is such an excellent reference, my favorite thus far, for taking copies of select pages from to your medical practitioner in order to continue on with the never-ending task of teaching, teaching, teaching . . . Likewise, his website, nightingale.com, along with the Canadian definition given therein provides the shortened version of what he has written in his aforementioned book. I always had faith that something significantly positive would occur before I die, and I’m nearly over-the-moon happy to be able to say that indeed my faith is beginning to pay off. I will continue spreading the word in my own tired but tooth-and-nails fighting spirit . . .
Thanks for the balanced review. It is indeed so that the authors only speak for themselves, not for institutes or the medical profession or establishment. I would even go as far as to say that Kenny De Meirleir is an outcast of the medical establishment in Belgium.
I also regret them mentioning XMRV in the paper. If more negative studies appear before this paper gets published or if the BWG or Lipkin study is negative then the mention of XMRV undermines the credibility of this article.
PS: Brussels isn’t a country, it is the capital of Belgium.
Thanks, Johan, for the catch. We will make the correction to the list of countries!
This post has been updated with a link to Table 1 from the paper, reproduced under limited license from Wiley & Sons, Inc.(http://www.research1st.com/wp-content/uploads/2011/07/Carruthers-JIM-Table-1.pdf) Copyright to the original material and all other rights reserved by John Wiley & Sons, Inc.
I believe this set of criteria could be an important step forward! As others have mentioned, I hope that IACFS/ME, CAA and NIH will back it up. Thanks to CAA for this excellent overview, I look forward to hearing more from you.
One thing I’m wondering is whether the authors believe there is evidence for Encephalomyelitis (inflammation in the brain)? Perhaps with the mounting evidence, such as the Schutzer study, this is the position they’re taking.
As for catching bugs, there seems to be two groups within the ME/CFS patient community. I am among those who catch absolutely everything, and every infection, which is minor in others, takes me weeks to clear. (I have a low count of white blood cells, though not low enough to classify as immunodeficiency.)
Firstly I agree with several respondents that changes in presentation over time are not sufficiently allowed for. I too have experienced not getting any virus infections in the past, but then it changed to getting everything under the sun, and wanting to avoid anyone who has a viral infection. At present i seem to be getting fewer viruses. I have never had a persistent sore throat, which so many people have.It is my experience that the illness changes over time – at the beginning all I could do was sleep – all night and virtually all day. Then I had several years of feeling wide a wake virtually all night, and feeling as though I had jet lag all the time.Now my sleep is much better, but I have to be very careful not to do things that make my sleep worse, such as working on my computer in the evening, and i have lots of things that help me to sleep, such as having a small radio that I can listen to if I wake during the night, that turns itself off after 90 minutes, so that if I fall asleep I am less likely to be woken up by the radio – I could go on, there is so much I do to help me to sleep. That brings me to my second point. I do agree with one respondent who resented being housebound being described as being only moderately affected. I am sure being housebound must be absolutley terrible. I did experience this at the beginning of my ME, i.e for the first few weeks, but I was lucky enough to have some very good help from various alternative practitioners, so that I was able to gradually do more, and within a few months i was able to work part-time. At this point i guess I would say i was 50% affected, and it was a terrible struggle to go to work, and stay awake while I was there. Gradually though, again with a lot of help from various alternative practitioners my condition has improved, particularly my physical activity, though I am still badly affected by mental activity, e.g. reading a book (particularly a difficult text like an academic book, or even the text of this paper). So I think that the authors’ statement that one would be less affected by reading a book than by grocery shopping does not apply to me. Depending on the type of book (eg easy-reading novel versus academic text)I may actually find it more tiring to read a book, and need a longer recovery time than if I had been grocery shopping for half an hour. So I find this part of the paper somewhat judgemental, and tending to make me feel excluded, even though at the beginning of my illness 14 years ago i would have satisfied the criteria, and I am quite sure that I continue to have the same illness that I had in 1997, it is just that a) it goes through different phases and b) some of the things I have done to tackle the symptoms have helped me so that the symptoms are not so severe.
I am grateful that after suffering from this disease for nearly 27 years, that a sensible name is being given to this despicable disease. I know that it will take a long time to determine what treatments to recommend in order for people to be able to have a better life. Those of us lucky enough to finally find an expert (Dr. Lapp) we got part of our life back and that was after being sick for 15 years.
My disease has morphed into the not so much viral symptoms, but the resultant neurological symptoms or, if you will, the damage that has been done. I developed both dysphonia and neuropathy on top of many of the standard symptoms. My neurologist agrees that ME probably plays a part in why I have these disorders. But there are many who have them without having ME. My husband has diabetes and neuropathy. He’s also cognitively challenged due most likely from chemo and other health issues. So we’re now on a level playing field cognitively.
I’m now in my 70s so aging on top of this makes life more of a challenge than ever. I don’t know that I’ll live long enough to see all these issues handled. It may take a few generations with such a complex disease.
I hope that being published in the Journal for Internal Medicine will finally give this disease the validity we’ve been craving.
I am anxiously waiting to hear how the CDC responds to this new set of ME/CFS criteria. I hope the CDC, under the guidance of the new CFS Chief, Dr. Unger, overwhelmingly endorses them, and not only starts using them (instead of the Reeves criteria) in all of their funded research programs, but promotes them and demands the rest of the world adopts them as well.
If they do not, it will be time for the CFS community to REVOLT in unprecedented proportions!
A paradigm shift in CFS is long overdue. Let this development be the first step in turning the tide. We want our health and our lives back!
I have all the criteria for the new standard. (And the old too!!) Now I just need a doctor who will treat me accordingly. Anyone know of such a physician in the Kansas City, Missouri area? I am about to turn 65 and my quality of life is severely impacted. I have spinal stenosis on top of ME/CFS.
Christina,
Dr. Joseph Brewer, an infectious disease specialist with Plaza Infectious Medicine in KC sees ME/CFS patients. There is however a long wait for an initial patient visit although if you are flexible you can probably get in sooner. The good news – he takes insurance.
He might not be taking any new patients if it is the same doctor my internist suggested I contact. (She said he took the crazy cases no one else would touch and was laughed at by his colleagues; she said all this and more with a snigger or two of her own.) But I will look him up and see if this is a new doctor you are referring to. The other one was on The Plaza, too. Here’s hoping.
I spoke with the office this morning and Dr. Brewer is not taking any new CFS patients and he has no other suggestions about finding a doctor who will, except a referral back to your primary care doctor. As I had feared, there is NO ONE who is truly working with and helping those of us with CFS here in metro Kansas City. I have had a fibro diagnosis since 2000 or so but SO MANY of my symptoms fit CFS and the new criteria as well. Very discouraging and frustrating.
As a 25-year PWC, I can see a progression from a low level to a now highers level of demise. During that time I, like many others have become an expert on the disease (synthesizing with theoretical constructs). Great knowing all this.
All the advocacy and recognition of the malaise is well and good. However, I and my counterparts will be on the other side of the grass before all is said and done and the FDA approves specific drugs for the treatment of CFS/ME. Meanwhile, we, sic elders wait around for the official recognition and treatment of the ‘boola – boola’ disease.
In my opinion we should prioritize researching who takes what drugs for various symptoms. Then take copies of the clinical treatments to various specialists, tell them we have the same symptoms and demand treatment for each. The moniker and approved protocol will fall into place.
As an Occupational Therapist and a person with ME/CFIDS, I would highly recommend that the physicians collaborate with an OTR/L when determining level of functioning and disability level. Our expertise lies in determining a persons level of function at home, work, and leisure. The MDs consult with us in the real world (in hospitals,rehab units)…why did they not do it for something so important!!
I like the new definition. But, i will need to read it several times to comprehend it all. Since i have a bad case of cfids its hard for me to retain all the information at once. However, it’s time to STOP using chronic fatigue as the name of this syndrome. Doctors, family, friends,etc do not take it serious!! Plus chronic fatigue is a major symptom but we all have so much for and viruses! Why can’t we call it a neuroimmune syndrome until we know how this syndrome is derived!! I strongly believe that the patient and physician community will start taking it more seriously!!! I know there is alot of action items that need to take place. However, changing the name should accelerate the need for research, treatment, and to a cure sooner than later.
I have a question. (Maybe it has already been addressed. If so, excuse me for reasking it.) On the individual numbered symptom criteria in each symptom cluster which gives an “a.” and “b.” option, what if a person only exhibits one of those 2 options? Does he or she only need “a.” OR “b .” to qualify as meeting that symptom?
That’s a great question, David. Our reading of the criteria is that you’d need only one of the symptoms in the “lettered” categories. The panel is working on Physician Guidelines and a scale, which will be helpful.
For a person with confused thinking, this is a LOT of information to take in and to try to respond to. I was diagnosed with CFIDS in 2000, so left work on disability. Then discovered I had diabetes, given meds for that. Thereafter, my irritable bowel was found to be Celiac disease. Two weeks ago I was given a Pacemaker, which was needed for electrical problems in my heart; this heart problem was making me extremely tired. My question is Should I still consider myself a person with CFIDS (ME, WHATEVER?) or do all the new diagnoses change that? I’d appreciate your opinion.
I heard that a primer will be available eventually but for doctors I presume but based on the Canadian Definition from 2003. I do hope someone comes up with something similar based on this new info. That last 4 pages of the International definition are easy to understand. I keep hoping there will be an easier way to access those 4 pages rather than getting into the PDF itself, which is cumbersome to use particularly for those cognitively challenged.
One other thing that might help you… this is the link to the pdf file of the new ME International Consensus Criteria Document. But if you can print the last 4 pages (36 – 39), you’ll have a concise description, very understandable, and something good to hand your doctor so they have a high level understanding of how to diagnose someone.
If they want more info, print the beginning of the document – there are many pages that include references to over 100 papers on this subject. So just skim over it and decide if you want to use that much paper or just print the meat of it at the beginning along with the last four pages.
Hope this helps, Nancy (aka GrannyCFS)
Here is the link to Table 1: http://www.research1st.com/wp-content/uploads/2011/07/Carruthers-JIM-Table-1.pdf, reproduced by the CFIDS Association of America under limited license from John Wiley & Sons, Inc., publisher of the Journal of Internal Medicine. Copyright to the original material and all other rights reserved by John Wiley & Sons, Inc.
The consensus in this name change is wonderful news. These new criteria are not perfect, but they do seem to better capture the disease than the old criteria, and I think will be taken more seriously by medical practitioners. This is only a start, and, as with any diagnostic criteria, revisions will take place, which I do hope will take into account the types of issues people have mentioned above.
Just tonight, I was in a converstation with a medical intern who said she had recently learnt in med school that CFS was caused by depression… she was sprouting this and other misinformation and I think she was quite annoyed when I gently said that that was no longer the current view and that there is now a lot more knowledge about CFS (her opinion being that as she learnt that at med school and she is an intern, it must be correct). I’m hoping this new consensus on ME criteria will force medical schools to revise their CFS/ME curriculum – which will in turn force lecturers and supervisors to update their knowledge in the area. Until this happens, we will still have medics out there generating shared ignorance and misunderstanding of the disease.
One thing though – I too concerned about the mild/moderate/severe categorisations – my current level of ME would only be classified as mild, yet I am more debilitated than some people I know with cancer (ME is, of course, less life threatening, but just as debilitating). I can barely cook for myself, have virtually lost all of my social life and just manage to hold down a part-time job… I am highly qualified and enthused in my career, but can barely work enough hours to earn enough to make ends meet because of my level of disability. I love my field of work, but am forced by this illness to work at a much lower level than I would otherwise. My house is an absolute wreck because I can only clean for a few minutes at a time. Yet my ME would be classified as mild. I agree with Melinda… they need OT input on this.
But overall the move to ME is a fabulous start – here’s hoping it gets taken on board!!
P.S. I have gained so much solace reading through the above comments – you are all inspiring. It is such a cruel disease, made even crueler by the misinformation and lack of understanding out there. Yet here I read sufferers using whatever energy they have to fight for better knowledge, to support each other, and to fight the disease itself. Inspiring – hang in there!
I appreciate this article and the responses by everyone here. Having read this, I am convinced that I have this along with FM. I have the mitral valve issue, the cystitis, basically all but 1 or two symptoms.
What would be the best way to bring this to my Doctor’s attention? She is wonderful, but sometimes I feel like some people must think I am making this all up, since nothing shows up in laboratory tests.
I haven’t been able to work in 30 months, have been denied SS Disability once and am currently appealing.
I don’t understand why people in various parts of the US are approved for disability in less than a year, and others receive benefits immediately. I am in Oregon, and have an attorney, but this doesn’t make the “wheels” turn any faster. It’s awful that these conditions are so entirely debilitating, and I have not much hope of getting disability assistance. I’ve worked and paid in to the system since I was 15 years old, sometimes working 2 & 3 jobs a few decades ago to support myself and my children… it feels like there is no use.
Thank you for all of your comments, having read them makes me know that I’m not alone. Going this long without income has been incredibly difficult (and also debilitating). I’m fairly highly educated, even though my congnitive ablilities have decreased… do they take in to account that we were once hard working contributors to society? It seems that they do not. Any tips would be appreciated.
Sincerely,
Sheila
Hi Sheila, Yours is a frequent question so we asked Dr. Lucinda Bateman to answer it for us. Her response is posted at http://www.research1st.com/2011/08/22/doc-talk-filling-the-info-gap/. If the attorney helping you with your disability application hasn’t already mentioned it, make sure he/she is aware of the Social Security Ruling 99-2p that provides some direction about disability related to CFS: http://www.cfids.org/advocacy/ssa-ruling.asp. Thanks for reading Research1st and we’re glad you’ve found some helpful information here.
Thank you so very much for your quick response and for your direction. I appreciate it so very much.
Sheila Earhart
I am not sure if this is the correct name to use. First you classify it as a neurologic disease. It is not a disease…it is a syndrome — a multitude of diseases. Afterwards, you call it a neuroimmune disorder. I agree it is a neuroimmunde disorder. I have 4 viruses that are attacking my immune system and CNS. I have most of the symptoms for this syndrome.
I AGREE WE NEED A CHANGE. IN THE UNITED STATES, CFIDS IS NOT TAKEN SERIOUSLY. To get more attention in the US, WE NEED TO CHANGE the name immediately! I hate to say it…but it is all about marketing and making people understand that this is serious. If you tell a doctor or family member or friends, etc — they think they have it too. Chronic FATIGUE is a SYMPTOM not a disease! If we want attention of doctors, the general public, and government agencies, it is mandatory to change the name and increase awareness about this debilitating syndrome! Until this is done, we have a long way to go. Furthermore, we need a cohesive team that will work together — doctors (infectious disease doctors, Neurologists, cardiologist, researchers) — to come together to write appropriate clinical protocals with the right patient population so that we can get to the bottom on this disease. I do not know why doctors in these categories will not work together! Most of the past studies are not helping the CFIDS patient. i see know progress in the interim to getting better treatment options…just treating the symptoms. We need a Multidiscplinary clinical Research facility with leading experts in the field of infectious disease (like Dr. Susan Levine), a cardiologist, and neurologist and have an onsite blood testing facility, MRI, and other testing needed for neurologists and cardiologists. This should be a research and treatment facility that patients can come when they have some type of “attack”. For instance, periodically, I get a shock in my brain and goes throughout my body and I feel like I am a high voltage light bulb but extremely tired…I would like to be able to walk into a research facility so I can have Cerebrospinal fluid analysis, EEG, ect. If I have an appointment with a day without my symptoms this will be missed! There are days where I sleep for days and I try to get up and I feel like I am getting injecting with a sedative and can’t get my body to wake up. I need my mother to pick me up and give me my medicine and it sometimes I need her to do it twice or I am not functional for the day or days! It is time to help CFIDS patients before it is too late!
Having had CFS diagnosed for 23 years, I,too, have found that I don’t seem to get viral infections as often or in the degree that others do.
I have grandchildren, under age 5, who have the usual colds and flu. I’m around them constantly, but I rarely catch their colds and flu. When I do get a virus, it comes on very slow, but seems to drag on much longer than others. Also, the intensity is much less severe. So when my grandchildren are ill, I feel I am able to go help out their moms because I rarely catch whatever the kids have. We all thought that was something weird about me, but after reading all your comments, it may because of the CFS. Thanks for all your comments. It’s been so helpful to me
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Carolyn
I’ve had CFS for 16 1/2 yrs. For the first 6 yrs I never caught anything. My husband would have the flu and i’d never catch it. But in the last 10 yrs every time I had to be in the hospital with my mom, I would catch whatever bacteria or virus that was available. 3 yrs ago I got viral meningitis and then encephalitis. Dr said it was from an entero virus and due to weakened immune system, broke through the blood/brain barrier. I was under tremendous stress at the time. Since then I’ve notice if I’m under a lot of stress, I get worse and catch everything. Avoiding emotional stress is the best thing I can do for myself. Of course, it’s not always possible.
I believe ME or CFIDS (or whatever you want to call it) can be described as BOTH a syndrome AND a disease. But perhaps the reason the word “syndrome” is absent from the new criteria is the very reason that you brought up. That is that in the past the word has, unfortunately, been used against those with this disease. For I have actually had a physician say to me, “You know what a “syndrome” means, don’t you?” And then he went on to inform me meant something that wasn’t legitimate, such as anything with the word “disease” attached to it. And you have just mentioned that “marketing” was important if we are going to fight this.
This whole word or semantic thing is silly. If you look up the word disease it is purely a generic reference to any ailment someone is suffering with, regardless if it is ONE symptoms or 100! It simply means DIS (not) – EASE (comfortable! For heaven’s sake! So, if anything is plaguing you, you have a disease. No, that might not be a technical or more medical definition. But even with that it is not all that far off. For any DISEASE can have many different symptoms. Mononucleosis is not a SYNDROME. And I am convinced whatever I have is not a ‘syndrome,” but something that is making my body ill, whether it from a virus, was from a virus and now is neurological in nature, or whatever. The simple fact that I don’t know what it is does not make it a “syndrome.”
The word “syndrome” only refers to it in a sociological sense, if that makes sense? That is, all of us may not actually have the same DISEASE, but we all seem to have the same SYNDROME. Do you know what I mean? It’s quite possible that someone who meets these criteria does not have the exact same disease that I have. But that doesn’t mean I, nor anyone else, doesn’t have a disease. And there’s nothing wrong with labeling the whole THING a “disease” either since, obviously, each ONE of us HAS a disease, even if it may not be the same exact one.
What I’m trying to say is that Disease can be used as a generic word. Syndrome refers only to categorizing common symptoms, as well as maybe geographical locations, or age, gender, and so forth (whatever’s appropriate). Part of this “syndrome,” for instance, is that it occurs much more in “females.” But I’m a male. So, that particular categorization has nothing to do with me. And that’s the “syndrome” part, or “sociological categorizing.”
What this new criteria, at least I believe, is trying to do, is get more to “the bottom” of it and make it less of a “syndrome” only, but attempt to deal with the root cause, which is the disease.
I myself actually have some issues with the premise, both that it ME/CFIDS is strictly a neurological disease (for CERTAIN), as well as the “Myalgic” part. (I can only use as SYMBOLIC… as the chronic pain which I suffer with is only in my head & neck area.) (Myalgic, the “M.” part, means “muscle pain” in the Latin.) And I don’t have the muscle pain. I have the immune dysfunction symptoms, such as chronic sore throat, tender lymph nodes, congestion, which all become worse with activity. I have most of the other symptoms, too (besides the muscle pain).
But I still consider myself having this DISEASE and not simply part of people of a particular “syndrome.” Why? Because I feel it makes it more legitimate to subscribe to having a disease, or legitimate theory of a disease which may indeed be the case. The fact that there is no blood test is not the point. I KNOW I have a disease BY DEFINITION, I just don’t know what it is or what causes it. So, to identify the DISEASE (not syndrome) as the most likely CAUSE of it, even if not sure, I feel is the best way to go. To simply say I have like symptoms as others would be only a syndrome, yes. But, I am speaking of myself and the (possible) cause of my disease. And this criteria attempts to deal with that issue, unlike the last one.
I have had this “syndrome” for over 20 years now and I no longer feel like being only part of a “syndrome” of people of like symptoms. Even though research has not discovered a cure, or even found out what this thing is, it has done enough, I feel, to find out at least that this theory of the “M.E. DISEASE” (not “syndrome) is what I most likely have. If I find out later I don’t have it, well, OK. I said above I have SOME reservations of “closing the book.” However, to me it makes the most sense, that my mono virus I got triggered something. And 4 years later when all the mono symptoms reappeared (I never had muscle pain with mono… every BODY reacts different to diseases) is when the neurological period began and never left. It makes sense because no one has ever caught this disease from me.
(By the way, I do catch things as much or more than I did prior to ME/CFIDS), but because I’m barely around anyone as I was before, I have fewer chances to catch things).
i am told i have cfs and ptsd,so in other words no one knows.one day its one and the next day the other.some time it would be nice to know the answer
i just perused a few other comments here and am glad to see that i am not the only one who does not seem to fit into the “immunological” category but definitely has PENE, neurological (all of them, in my case, my CNS is a mess) and energy transport symptoms. sure, the first few months of this illness started with a nasty infection (tropical viral thing, most likely) and then since i wasn’t resting at first, still going to work as i wasn’t running a fever, i got a bad cold, but since then no more colds or flus. that was about 8 years ago. i catch way less stuff now than people around me. i suppose i could be considered “typical” if i fudged a bit and only considered the first 8-9 months of my CFIDS/ME and not the last 8 years or so, that first part being the time when i met at least two of the immunological criteria. and i could fudge a bit more and say that i’m sensitive to certain odors, like smoke, but that’s not that different than before my illness. i occasionally have an aversion to a certain foods but that feels more hormonal than anything else and once again, that’s not much different than before. i get over it and no food or chemical actually makes me sick. i’m a bit more sensitive to meds i suppose, but i don’t think that counts either. i simply need lower dosages and don’t actually feel sick from meds. any real gastrointestinal probs i thought i had turned out to be POTS-related (i.e., BP goes down, pulse and adrenaline go up, and then i feel like i have to go to the bathroom a lot, not so different from that “right before you have to make a big speech or something else that makes you nervous” sort of feeling when all of the sudden you want to go to the bathroom).
if this criteria is adopted i suspect that lots of us will end “atypical,” given our lack of immune probs. if anything, i feel like my immune system is too strong. my antibody level is quite high for HHV-6 and sometimes i wonder if my condition has become more autoimmune, like the antibodies are going strong — too strong — and there’s no longer even any virus for them to fight.
I have autoimmune problems and post-exertional immune problems. My doctors want to give me an ME label and CBT so that I stop pestering them for help finding a cure.
I have found some things that help the symptoms. Sore throats in ME may be caused by night-time reflux, or Laryngopharyngeal reflux if you want to talk to your doctor. This can wake you at night and disrupt your sleep but you may not have any pain. Doctors often miss it. Don’t eat for a few hours before sleeping, raise the head of your bed with wooden blocks and see if your throat is less sore.
If that doesn’t help try a gum containing xylitol. This is a natural anti-bacterial that helps those who get a lot of infections. There is quite a lot of published medical research on it’s benefits. It’s mildly laxative but most people adapt to that if you start slowly and work up to 2 gms of gum after each meal. Careful hand-washing also helps, many people failto wash between their fingers.
A vitamin D supplement may help restful sleep. Check out work by Dr Gominak, an American neurologist. Vitamin D should be taken by all housebound people.
I’m currently taking calcium and magnesium and investigating suggestions that a low oxalate diet may help. A gluten free diet gave me my life back for many years, I firmly believe that digestive disorders contribute heavily to ME. Calcium or magnesium citrate may help.
Don’t ever give up – a few doctors are finally finding things to help
This seems to me to be potentially helpful and a big improvement in the situation I faced some fifteen years ago when I became I’ll here in Cornwall in the UK. My experience was so bad that I was pretty much left to find my own way through the maze of misery. My choice seemed to be that I could either go along with their notion that it was ‘all in my head’ or I could just go away and stop ‘reporting sick’. I chose the latter and I have been managing my illness more or less successfully ever since. The big breakthrough for me came when, as part of a study of some alternative and complementary therapies, I wrote a paper on the nature of spirituality. It took me on a journey that gave me back my voice and I have been very much better ever since. What I am saying, I think, is that there are no quick fixes and this is a very ‘individualised’ illness. Better to have the support of a framework that recognises it, though, than to be out there in the wilderness entirely on your own.
I just read through the International Consensus Criteria for ME (July 2011)of which a link was given 10/2012 in the Research 1st News. I saw a descrepancy between the information in this article in comparison to the paper. This summary article states…
The paper provides severity subgroups: “Symptom severity impact must result in a 50 percent or greater reduction of a patient’s premorbid activity level for a diagnosis of ME. Mild: approximately 50 percent reduction in activity; Moderate: mostly housebound; severe: mostly bedbound; and Very Severe: bedbound and dependent on help for physical functions.”
However, in the actual document, it states…
Symptom severity & impact:
Mild: meet criteria and have a significant reduction in activity level; Moderate: approximately 50% reduction in pre-illness activity level; Severe: mostly housebound; Very severe: mostly bedbound and require assistance with daily functions.
Some were concerned about the descriptions of the severity levels according to the summary article. I understand that concern as the summary article’s descriptions wouldn’t be an accurate assessment of severity levels. However, when I look at the actual paper’s descriptions they seem more balanced and in line with a sensible severity scale. I thought I’s make Kim and others aware of this descrepancy as there is confusion about the author’s of the ICC’s intentions with the severity scale.
Thanks, Kim for your reporting and advocacy for this illness!
Thanks, Diana. Our summary is based on the International Consensus Criteria for ME as published July 2011 in the Journal of Internal Medicine, which states: “Symptom severity impact must result in a 50% or greater reduction in a patient’s premorbid activity level for a diagnosis of ME. Mild: approximately 50% reduction in activity, moderate: mostly housebound, severe: mostly bedbound and very severe: bedbound and dependent on help for physical functions.” (See http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full).
The authors have revised the symptom severity criteria in the self-published primer (October 2012), which states “Symptom severity & impact:
Mild: meet criteria and have a significant reduction in activity level;
Moderate: approximately 50% reduction in pre-illness activity level; Severe: mostly housebound;
Very severe: mostly bedbound and require assistance with daily functions.
Those who are very severely affected are too ill to attend regular medical appointments.” (See page 15, http://www.hetalternatief.org/ICC%20primer%202012.pdf)
You’ve raised a source of potential confusion here, although it is likely that the case definition, published in a peer-reviewed journal, will reach more physicians and researchers than the primer.