August 8th, 2018: Understanding and Remembrance Day for Severe ME
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Let's not forget what's IN the IOM report!

Discussion in 'Institute of Medicine (IOM) Government Contract' started by DanME, Feb 11, 2015.

  1. DanME

    DanME Senior Member

    While getting confused, excited or frustrated about the new name and the new criteria, the IOM proposed, we shouldn't forget, what's actually said in the full report. The 300 pages document is very exhaustive and they tried to cover all of the main issues regarding ME/CFS. I just crossread it, but it is full of remarkable statements so far. I was really surprised and impressed, how accurate they have been most of the times. Not always of course. Also they included tons of studies. So many indeed, it is a bit overwhelming. Here some statements. Sry, very long post.

    About ME/CFS/SEID in general:

    "The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is “real.” It is not appropriate to dismiss these patients by saying, “I am chronically fatigued, too.”

    "The cause of ME/CFS remains unknown, although in many cases, symptoms may be triggered by an infection or other prodromal events such as “immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals, and rarely blood transfusions."

    "Seeking and receiving a diagnosis can be a frustrating process for patients with ME/CFS for several reasons, including a lack of understanding of diagnosis and treatment of the condition among health care providers and skepticism about whether it is in fact a true medical condition. Less than one-third of medical schools include ME/CFS-specific information in their curriculum (Peterson et al., 2013), and only 40 percent of medical textbooks include information on the condition (Jason et al., 2010). Some studies on awareness of ME/CFS have found high awareness among health care providers, but many providers believe it is a psychiatric/psychological illness or at least has a psychiatric/psychological component (Brimmer et al., 2010; Jason and Richman, 2008; Unger, 2011)."

    "ME/CFS can cause significant impairment and disability that have negative economic consequences at the individual and societal levels. At least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives (Marshall et al., 2011; NIH, 2011; Shepherd and Chaudhuri, 2001). The direct and indirect economic costs of ME/CFS to society are estimated to be between $17 and $24 billion annually (Jason et al., 2008), $9.1 billion of which can be attributed to lost household and labor force productivity (Reynolds et al., 2004)"

    "Although a variety of names have been proposed for this illness, the most commonly used today are “chronic fatigue syndrome,” “myalgic encephalomyelitis,” and the umbrella term “ME/CFS.” Reaching consensus on a name for this illness is particularly challenging in part because its etiology and pathology remain unknown (CFS/ME Working Group, 2002)."

    "In addition to difficult interactions with health care providers, patients have reported several other ways in which the stigmatization of ME/CFS affects them, including financial instability (such as job loss or demotion), social disengagement, and feeling the need to hide their symptoms in front of others (Assefi et al., 2003; Dickson et al., 2007; Green et al., 1999)."

    "Symptoms can persist for years, and most patients never regain their premorbid level of health or functioning (Nisenbaum et al., 2000; Reyes et al., 2003; Reynolds et al., 2004). The duration of ME/CFS and the potentially debilitating consequences of symptoms can be an enormous burden for patients, their caregivers, the health care system, and society."

    "Patients with ME/CFS have been found to be more functionally impaired than those with other disabling illnesses, including type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease."

    About fatigue:

    "Regardless of what criteria are used, however, ME/CFS patients often have a level of fatigue that is more profound, more devastating, and longer lasting than that observed in patients with other fatiguing disorders. In addition, fatigue in ME/CFS is not the result of ongoing exertion, not lifelong, and not particularly responsive to rest (Jason and Taylor, 2002)."

    "However, ME/CFS should not be considered merely a point on the fatigue spectrum or as being simply about fatigue. Experienced clinicians and researchers, as well as patients and their supporters, have emphasized for years that this complex illness presentation entails much more than the chronic presence of fatigue. Other factors, such as orthostatic intolerance, widespread pain, unrefreshing sleep, cognitive dysfunction, and immune dysregulation, along with secondary anxiety and depression, contribute to the burden imposed by fatigue in this illness."

    About PEM:

    "As described by patients and supported by research, PEM is more than fatigue following a stressor. Patients may describe it as a post-exertional “crash,” “exhaustion,” “flare-up,” “collapse,” “debility,” or “setback.” PEM exacerbates a patient’s baseline symptoms and, in addition to fatigue and functional impairment (Peterson et al., 1994), may result in flu-like symptoms (e.g., sore throat, tender lymph nodes, feverishness) [...]"

    "PEM is worsening of a patient’s symptoms and function after exposure to physical or cognitive stressors that were normally tolerated before disease onset. Subjective reports of PEM and prolonged recovery are supported by objective evidence, including failure to normally reproduce exercise test results (2-day CPET) and impaired cognitive function. These objective indices track strongly with the presence, severity, and duration of PEM."

    "Many studies have demonstrated that pain is increased and prolonged after a physical stressor in ME/CFS subjects compared with healthy or sedentary controls. Similar to the evidence base for fatigue, reports of increased pain among ME/CFS subjects are consistent across maximal exercise tests (Davenport et al., 2011a,b; VanNess et al., 2010) and other physical stressors (Black et al., 2005; Nijs et al., 2010)."

    About Sleep:

    "It is clear, however, that people with ME/CFS universally report experiencing unrefreshing sleep, and further research will be important to determine whether there is a specific sleep abnormality common to ME/CFS patients or a heterogeneity of abnormalities that may define subsets of ME/CFS patients."

    "Despite the absence of an objective alteration in sleep architecture, the data are strong that the complaint of unrefreshing sleep is universal among patients with ME/CFS when questions about sleep specifically address this issue."

    "ME/CFS patients are more likely than healthy controls to experience sleep-related symptoms occurring at least half of the time and of at least moderate severity (see Figure 4-2) (Jason et al., 2013b). Although sleep- related symptoms also are reported by healthy persons and by chronically fatigued persons who do not fulfill ME/CFS criteria, a greater percentage of people fulfilling ME/CFS criteria report unrefreshing sleep, sleep distur- bances, and difficulties falling asleep or waking up early in the morning (Komaroff et al., 1996a; Krupp et al., 1993; Nisenbaum et al., 2004) relative to these other groups."

    About neurocognitive function:

    "Impairments in cognitive functioning are one of the most frequently reported symptoms of ME/CFS. Patients describe these symptoms as de- bilitating and as affecting function as much as the physical symptoms that accompany this disease. During a survey of ME/CFS patients, descriptions of neurocognitive manifestations included, among others, “brain fog,” “confusion,” disorientation,” “hard to concentrate, can’t focus,” “inability to process information,” ..."

    "Collectively, the studies reviewed here support the notion that ME/CFS patients present with neurocognitive impairment. Slowed information pro- cessing, demonstrated by objective neuropsychological testing and potentially related to problems with white matter integrity, is one of the strongest neurocognitive indicators in support of a diagnosis of ME/CFS, particularly if there is evidence of normal functioning on untimed tests and impaired functioning on time-dependent tasks."

    About OI:

    "There is consistent evidence that upright posture is associated with a worsening of ME/CFS symptoms, as well as the onset of other symptoms such as light-headedness, nausea, and palpitations. While there is variability in the reported prevalence of orthostatic intolerance in ME/CFS, heart rate and blood pressure abnormalities during standing or head-up tilt testing are more common in those with than in those without ME/CFS. Heart rate variability analyses demonstrate a sympathetic predominance of autonomic tone in those with ME/CFS, including during sleep."

    "Orthostatic intolerance can occur as an isolated syndrome or in as sociation with a variety of other comorbid disorders, including ME/CFS (Benarroch, 2012). The most prevalent forms of orthostatic intolerance in the general population, as well as among those with ME/CFS, are POTS and neurally mediated hypotension (NMH), with delayed variants of orthostatic hypotension and orthostatic tachycardia also being seen."

    About Pain:

    "Sufficient evidence shows that pain is common in ME/CFS, and its presentation supports the diagnosis. However, while pain worsens ME/CFS when present, there is no conclusive evidence that the pain experienced by ME/CFS patients can be distinguished from that experienced by healthy people or those with other illnesses. Further, pain may be experienced in many areas, and while comprehensively assessing a patient’s pain symptoms is a challenging task, it is not specific to ME/CFS."

    About Immune Impairment:

    "Symptoms related to inflammation are reported frequently by ME/CFS patients. When attempting to convey their illness experience to healthy persons, many patients describe it as similar to a perpetual flu-like state (Maupin, 2014). Patients also report persistent or recurrent sore throats, tender/swollen cervical and/or axillary lymph nodes, muscle pain, achy joints without swelling or redness, headaches, chills, “feverishness” (but not necessarily meeting objective criteria for fever), and new or worsened sensitivities to certain substances (e.g., foods, odors, medications) (FDA, 2013)."

    "One of the most consistent findings in ME/CFS subjects is poor NK cell function. Using K562 cells as target cells, 16 of 17 studies reviewed found poor function in subjects compared with healthy controls. How- ever, this finding should be interpreted with caution as even the strongest of these studies are subject to methodological limitations discussed at the beginning of Chapter 4."

    "Low NK cytotoxicity is not specific to ME/CFS. It is also reported to be present in patients with rheumatoid arthritis, cancer, and endometriosis (Meeus et al., 2009; Oosterlynck et al., 1991; Richter et al., 2010). It is present as well in healthy individuals who are older, smokers, psycho- logically stressed, depressed, physically deconditioned, or sleep deprived (Fondell et al., 2011; Whiteside and Friberg, 1998; Zeidel et al., 2002)."

    About Autoimmunity:

    "In other studies, ME/CFS or postviral fatigue syndrome patients showed antibodies to smooth muscle (36 percent) (Behan et al., 1985), heat shock protein 60 (24 percent) (Elfaitouri et al., 2013), and endothelial antigens (30 percent) (Ortega-Hernandez et al., 2009). The only clinical trial targeting antibodies found moderate to marked clinical improvements in 10 of 15 subjects treated with rituximab, a B cell depleting antibody, and 2 of 15 placebo arm subjects at a single time point (Fluge et al., 2011). This, however, was a post hoc analysis as the trial failed to meet its primary endpoint. Currently, researchers in the United Kingdom and Norway are conducting further studies addressing this question (Edwards, 2013; Mella and Fluge, 2014)."

    About Neueoendocrinic Function:

    "Patients with ME/CFS may have relatively reduced overnight cortisol, 24-hour urinary cortisol, CRH and/or AVP, and ACTH levels compared with healthy controls. The current preponderance of evidence points to normal adrenal function in such patients and suggests a secondary (central) rather than a primary (adrenal) cause of reduced but not absent cortisol production at the level of the pituitary, the hypothalamus, or higher. Pa- tients with ME/CFS may have defective serotonergic signaling in the brain, localized to the level of the hypothalamus or higher, resulting in down- stream dysregulation that may play a role in ME/CFS. The exact mechanism is not clear."

    About Infection:

    "The literature indicates a possible relationship between EBV and ME/CFS. The evidence suggests that ME/CFS can be triggered by EBV infection, but there is insufficient evidence to conclude that all ME/CFS is caused by EBV or that ME/CFS is sustained by ongoing EBV infection. Improved diagnostic techniques may reveal as yet undetected associations. Further research in this area is warranted to determine whether patients in whom disease was triggered by EBV or patients with evidence of an ongoing abnormal response to EBV represent clinically significant subsets of ME/CFS.
    There is insufficient evidence for an association between ME/CFS and bacterial, fungal, parasitic, and other viral infections. These infectious agents may, however, be comorbidities, and their presence may reflect the presence of problems with immune function in these patients. Future re- search may clarify the role of these infections in this illness."
    Last edited: Feb 11, 2015
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  2. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    This is good, I may use that part in the report for a court case I have starting next week to help explain why I cant go to "any" doctor and need ones who understand the condition.

    I find it interesting that they only used the term "umbrella term" for ME/CFS and made the other two terms sound different to that. Does this mean they are going to finally separate ME and CFS???

    Another good part.

    Very glad to see that

    About fatigue:

    I once had a CFS doctor who put in a report that I cant have ME/CFS as aggressive rest therapy helps me and my symptoms lessen with this.

    This part I can see could be used against us when we say "I need to rest", mine is quite responsive to long rest periods (even if they are few day rest periods) thou of cause rest doesnt cure me. I dont like how this part was worded, it makes rest sound less important to us as if it wont help us at all anyway.

    Good to see OI mentioned

    I like that part.

    Great to see 2-day CPET mentioned.

    good info

    Im not happy at all with that part. There is no mention at all of high BP spikes in ME/CFS .. orthostatic hypertension which as many as 30% of us I think have. (Its probably cause noone has studied it yet but still, its not good there is no mention AT ALL on something many of us get and which can be actually dangerous).

    Im completely shocked at that, once again its probably due to lack of studies done. I know "healthies" do not understand the kinds of pain Ive had with ME.[ Im sure the types of of pain and the severity of pain, are not something experienced generally by healthy people.
    Last edited: Feb 11, 2015
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  3. justy

    justy Donate Advocate Demonstrate

    Can we have a link to the document please - there are now so many threads on this subject and I cant find a link to the report.

    Gingergrrl likes this.
  4. halcyon

    halcyon Senior Member

    This is the actual report. The link to download the report or read it online is on the far right of the page. The other documents can be found here.
    Anne, L'engle and justy like this.
  5. A.B.

    A.B. Senior Member

    This is the full report.

    Attached Files:

    Anne, merylg, MeSci and 5 others like this.
  6. DanME

    DanME Senior Member

    Of course.

    At top right of the page you can download the report for free.
    Anne, Roseblossom and justy like this.
  7. Gingergrrl

    Gingergrrl Senior Member

    @justy I was trying to find the link to the document too! If someone could post it and maybe it could be thumb tacked to the top of one of the forums then we can all easily find it.

    ETA Our posts crossed and thank you to everyone who just provided the link. Hopefully I can find it again tomorrow!
    oceiv and justy like this.
  8. adreno

    adreno PR activist

    I haven't read the full report, but from the excerpts here it sounds like a major step in the right direction.
    snowathlete, Valentijn and justy like this.
  9. Bob

    Bob Senior Member

    England (south coast)
    Anne, Roseblossom, Sean and 1 other person like this.
  10. Iquitos

    Iquitos Senior Member

    Yes, the guts of the report are overall very good. Good, too, that the "behavioral science" expert they relied on is our own Leonard Jason.
    Anne, L'engle, Sean and 3 others like this.
  11. Gamboa

    Gamboa Senior Member

    I'm glad someone has finally posted about reading the actual report. Thank you. I have been getting quite upset about all the anger coming from so many people all over on various forums, facebook, blogs etc.I was beginning to wonder if I was missing something. I read the report and saw so many good things about it. I don't like the name SEID but perhaps that can change.
    Anne, charlie1, JaimeS and 7 others like this.
  12. snowathlete

    snowathlete Senior Member

    Very important to read the report, or some of it, because it's very good from what I have read. The report content is actually more important than the propossed name. Of course, what is even more important is whether this leads to approprite funding for research, but a good report is essential to stand a chance of that.
    Anne, Sidereal, Roseblossom and 6 others like this.
  13. Roseblossom


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