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10 Things About ME/CFS

Discussion in 'Advocacy Projects' started by Alea Ishikawa, May 12, 2015.

  1. Alea Ishikawa

    Alea Ishikawa

    I put a variation of this together to give to some folks. I may go back and convert the links to proper scholarly citations, but for now I'm releasing it since today is May 12th - ME/CFS & FM Awareness Day. I figure it might help others.

    If you repost, please be sure to include the links!



    by A. Ishikawa

    Chronic Fatigue Syndrome (CFS) is a complex disease, classified by the World Health Organization as a nervous system disorder.

    CFS has also been called Chronic Fatigue Immune Deficiency Syndrome (CFIDS) or Postviral Fatigue Syndrome (PVFS). In some parts of the world, CFS is interchangeable or paired with Myalgic Encephalomyelitis (ME). Myalgia means "muscle pain" and encephalomyelitis roughly means "inflammation of the brain and/or spinal cord."

    Below are some things about ME/CFS:

    1. If regular fatigue is a match, then CFS is a nuclear bomb
    [paraphrase of statement by Laura Hillenbrad, author of Seabiscuit and Unbroken, a CFS patient].

    ME/CFS is not feeling a little tired or sleepiness. It is not the "good fatigue" a person feels after intense exercising, shopping, or a hard day's work. It is not cured by sleep/rest. Under the Fukuda criteria, CFS requires at least 4 of 8 symptoms besides chronic fatigue, such as intense headaches, swollen lymph nodes, and post-exertional malaise (PEM). A "mild" diagnosis from the ICC requires a 50% reduction in normal activity levels.

    ME/CFS is a diagnosis of exclusion. Medical staff must run a battery of tests to rule out other possible fatiguing conditions. Anything which can adequately explain symptoms - such as cancer, depression, or allergies only - rules out a diagnosis of CFS.

    ME/CFS is not psychological. Researchers have found a host of clinical abnormalities, including reduced natural killer cell function, increased inflammatory cytokine markers, and more. Dr. Rich Van Konynenberg explained patients' bodies are shown to be continuously fighting with the "civilians" of the immune system but not "winning the war."

    2. Quality of life in ME/CFS is reported to be less than in other chronic illnesses.

    Dr. Sarah Myhill saw brain scans of CFS patients, but without knowing a diagnosis would have assumed she was looking at scans of stroke patients due to the impaired blood flow.

    Dr. Nancy Klimas, who worked with both AIDS and ME/CFS patients, said that out of the two diseases she would rather have AIDS, if given the choice in 2009.

    Many ME/CFS patients may be unable to complete school, maintain a job, or raise a family. About 19% of CFS patients were reported to work full-time, 64% had work limitations, and 51% were on disability. An estimated 10-25% of patients are housebound or bedbound in the UK.

    As Laura Hillenbrad stated, many patients were driven, hard-working individuals prior to onset. Although CFS is diagnosed more in women - as is found in autoimmune disorders such as lupus - it can affect persons regardless their socioeconomic status, gender, or ethnicity.

    Some patients have died as a result of ME/CFS complications. One patient, Sophia Mirza, was revealed on autopsy to have dorsal root ganglionitis (inflammation of the spinal cord) which is believed to have caused her debilitating symptoms.

    3. CFS patients have a lower VO2max and reach anaerobic threshold earlier.

    ME/CFS is not the result of deconditioning or a sedentary lifestyle. On a 2-day CPET (cardiopulmonary exercise test), CFS patients were unable to reproduce their results from Day 1 on Day 2, indicating the effects of post-exertional malaise (PEM). Sedentary controls, however, were able to reproduce their exercise results. CFS patients were shown to give full effort, as measured by clinical instruments.

    Anaerobic threshold is reached by athletes performing strenuous activities, such as a mile race. However, CFS patients may reach anaerobic threshold by performing basic tasks, standing, or even sitting. Performing at or above the anaerobic threshold results in PEM and also muscle pain from lactic acid build-up.

    According to Staci Stevens of the Workwell Foundation, CFS patients should only exercise for a maximum of 30 seconds (they recommend analeptic exercise) and must rest thereafter. Programs such as Graded Exercise Therapy (GET) can push a patient beyond their energy envelope, which can lead to damage, sometimes long-term.

    4. ME/CFS is different from depression and/or anxiety.

    In contrast with depressed or anxious patients, CFS patients might have high levels of serotonin and low-normal levels of cortisol (including UFC).

    SPECT scans revealed CFS patients have a markedly lower midcerebral uptake index when compared to patients with unipolar depression. An EEG was successfully used to identify CFS vs. depressed patients.

    Anti-depressants may help patients with pain and sleep, but may overstimulate the sympathetic nervous system - which is already typically dominant in CFS - and cause unbearable side effects.

    Programs such as Cognitive Behavorial Therapy (CBT) and support group therapy are not curative for ME/CFS, but may help with coping or co-morbid psychological conditions.

    5. CFS patients were found to experience mitochondrial dysfunction.

    Mitochondria are the "energy power plants" of the body, so mitochondrial issues mean lower energy. One ME/CFS patient described his situation as having a lower-capacity battery that takes longer to charge, and the energy is used up more quickly.

    Dr. Myhill et al. found healthy controls had a mitochondrial function score of 1.00-2.83. In contrast, CFS patients scored an average of 0.42. Generally, the lower the patient's mito score, the lower their ability (see graphs).

    Mitochondrial impairment can result in prolonged angina or chest pain. Patients sometimes may not have the energy to lift silverware, speak, or think - or they can only speak short phrases or single words. Patients may be unable to regulate body temperature, and may experience heat or cold sensitivity and light and sound sensitivity. Very severe patients may be confined to bed in a dark and quiet room with IV/tube feeding. If you see a patient out and about, that may be the only day of the week they feel well enough to be in public.

    6. CFS patients typically have more lactate in ventricular cerebrospinal fluid (CSF).

    One study found the mean lactate measured in CFS patients was 348% of healthy controls. Another study found CFS patients experienced mental fatigue above 2 standard deviations vs. the mean score of healthy subjects, when completing the same task.

    7. CFS patients typically have abnormal brain scans.

    Using new imaging technology, Stanford found CFS patients have reduced white matter and an abnormality on one side of the brain vs. healthy controls. SPECT scans show reduced blood flow and thus oxygen to the brain. An MRI may show lesions.

    One study found patients have inflammation in one or more areas of the brain, which correlated with symptom severity. Brain inflammation (termed "encephalitis") may be fatal when acute, but CFS patients can experience lower levels of chronic inflammation, which can cause pain and cognitive dysfunction.

    Brain issues can cause cognitive deficits.
    Cognitive functions include memory, decision-making, planning/organizing, conversation, spatial relationships, and reading. This means a patient's ability to read a book, phone a friend, or keep up with other sensory information can be negatively impacted. Sometimes, a patient can "word salad" - unconsciously mixing up words when speaking.

    8. Many ME/CFS patients have orthostatic intolerance (OI).

    Researcher believe that OI may be caused by autoimmunity or a viral infection which has affected the autonomic nervous system, impacting blood pressure and heart rate.

    For example, Neurally Mediated Hypotension (NMH) can cause a person to faint while standing. Postural Orthostatic Tachycardia Syndrome (POTS) is associated with a reduction in diastolic and systolic cerebral blood flow by 60% and 44%, respectively, during testing. This can make simple tasks such as grocery shopping, stovetop cooking, or tooth-brushing challenging to impossible.

    OI can be diagnosed via a tilt-table test. OI may be helped by compression stockings, salt and water to increase blood volume, and/or medication such as a beta blocker and/or vasopressor. [CFS patients typically have lower blood volume, perhaps short by as much as 1 liter, vs. healthy controls, so vasoconstrictive medication may be beneficial to those with lower blood pressure.]

    9. About 10% of CFS patients reached sustained remission after 3 years.

    There is no known single cause or cure for ME/CFS. Of the few patients who reach a remission, some report relapsing, precipitated by childbirth or infection, and can experience a reduced level of functioning even below their prior level of illness. Some patients may report improvement, even if small. Beyond that, patients must deal with symptom management.

    Palliative care may include a methylation protocol to raise glutathione by using L-methylfolate and a specific type of Vitamin B12, with sufficient potassium and co-factors [Patients are suggested to use caution, as methylation protocols can lead to hypokalemia, which can be fatal]. Other potentially helpful care may include acetyl-l-carnitine or L-carnitine fumarate, fish oil, CoQ10 or reduced CoQ10, sodium bicarbonate, D-ribose to help with ATP, caffeine for cyclic AMP, and more. Note that D-ribose was found to cause glycation in mice. Not all supplements work for everyone and results may depend on genetic mutations, etc.

    [According to Dr. Konynenburg, most patients have been found to have a reduced level of glutathione, which helps with detoxification and protects the vitamin B12 around mitochondria in the body. Glutathione depletion is also linked with Multiple Chemical Sensitivity (MCS).]

    10. Recent research shows some ME/CFS subsets might be an autoimmune disorder.

    The Institute of Medicine report in February 2015 mentioned studies which accounted for three separate autoimmune disorders affecting 20% or more of patients in each study. In one study, 24% of CFS patients tested had antibodies to heat shock protein 60 (HSP60). HSP60 is found in viruses, bacteria, and mold, but also human mitochondria - suggesting some CFS patients might have a pathogen-induced autoimmune disorder.

    A recent study found that CFS patients may also have autoimmunity to serotonin.

    Some patients have successfully managed their condition with an immune drug such as Rituximab or Ampligen or have found help via Low-dose naltroxene (LDN). In a Norwegian Rituximab trial, 67% patients experienced at least a moderate reduction in fatigue, with 10% being symptom-free on follow-up. LDN is about $30 USD/mth; Ampligen and Rituximab cost thousands per month.

    However, patients may also have one or more ongoing infections. Thus, it is important to test for and treat any initial, reactivated, or opportunistic pathogens, including reactivated EBV (mono), CMV, HHV-6, Lyme and Lyme co-infections, etc.

    According to current research, CFS is not shown to be contagious. However, CFS may have a genetic component, as those diagnosed with CFS have a higher incidence of having a relative diagnosed with the illness.

    For more information, please see the IACFS/ME Primer for Clinical Practitioners.

    Note: I recognized the Fukuda criteria, Canadian Consensus Criteria, and International Consensus Criteria while compiling this piece.
    Last edited: May 19, 2015
  2. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
  3. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    There is another thing which would go well in the lactate area. There was one study done which showed we have up to a 300% increase over what a normal person does with lactate build up in our muscles. I'll see if I can find it.
    L'engle likes this.
  4. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    oh maybe Im getting confused, I just found study for lactate in brain, I don't know if its the same one you were refering too or not. http://sacfs.asn.au/news/2010/08/08_14_study_finds_high_levels_of_lactate_in_brain.htm

    His study, published in October 2008 in the NMR in Biomedicine, found that more than 50 percent of the CFS patients studied had cerebrospinal fluid lactate levels up to 348 percent higher than the healthy controls.

    I suggest you add that as 348% higher then controls is kind of astounding.
    L'engle and Crux like this.
  5. sarah darwins

    sarah darwins I told you I was ill

    Cornwall, UK
    Great work, @Alea Ishikawa - thank you.

    I'm going to print a few copies of that, one for myself and a couple for people I know who need to read it!
    JaimeS likes this.
  6. Hutan

    Hutan Senior Member

    New Zealand
    Thanks @Alea Ishikawa and good work.
    I'm going to give copies to a few people.

    I have a quibble with the 'driven hardworking individuals' bit - it's a bugbear of mine. I've copied below part of a letter I wrote to a particularly annoying specialist to explain my problem with it.

    A number of doctors have made the same comment to me about CFS being a disease of high achievers as you did, with some helpfully clarifying that the illness is a consequence of driven personalities when paired with bodies that can’t cope with the pressure. I’m not saying that you yourself meant to blame me for my illness, just that it is a logical conclusion of the viewpoint that CFS is a disease of high achievers.

    It seems to me that if there isn’t a clear biomarker for an illness, then the medical profession does tend to blame the patient (e.g. multiple sclerosis was hysterical paralysis before MRIs and stomach ulcers were just a product of unmanaged stress until H. pylori was discovered).

    I have thought about and looked in to this statement about high achievers a bit as both I, my children and my Indonesian colleague’s child would probably have been characterised as high achievers. It is possible that high achievers might push through symptoms rather than resting and so predispose themselves to developing this chronic condition.

    But my son is a laid-back, minimal effort kind of high achiever and he has probably been the most ill in my family. Looking on internet fora, there seem to be people of all types affected by the disease including some who happily self-characterise as under-achievers. At the time that my children and I got ill we were feeling unstressed and happy about the forthcoming year back in Melbourne and our family home.

    Actually there is no good evidence to support the idea that a person’s personality affects the likelihood of them developing tightly defined CFS (as opposed to nebulous chronic fatigue). In the over 60 documented outbreaks of CFS, a wide range of people were affected. There is however good evidence that CFS is significantly under-diagnosed in non-Caucasian populations and populations that are poor and under-educated. I think what is really happening here is that it takes resources, self-esteem and strong motivation to keep turning up at doctor’s surgeries long enough to go through all the exclusionary tests and to eventually arrive at the CFS diagnosis. High achievers may therefore be over-represented in diagnosed CFS patients.

    Resources, because it often costs a lot to see a specialist in any useful time frame and undergo required tests and typically a CFS patient has to see many doctors before a diagnosis is made. This is at a time when they often are too sick to earn an income. And when it becomes clear that the specialists can’t help, it often makes economic sense to just withdraw from the medical system. Also, it takes mental and physical effort to arrange referrals and get to specialist appointments. When there is barely enough energy to just get through the day, attending an appointment that you know is unlikely to help and will probably be emotionally draining can be a low priority. High-achievers are more likely to have the resources and support to persist in engaging with the medical profession.

    Self-esteem, because if you have been told all your life that you aren’t trying hard enough in school and work and some part of you believes that you are weak and lazy then you might readily accept a medical opinion that it is just that you aren’t working hard enough to get better and it is all in your mind. You might be in awe of doctors and accept their verdict that you are just depressed, not getting enough sleep, getting old, menopausal or making it all up to get attention. Parents of a child with CFS who has been struggling at school might readily accept pronouncements from psychologists that the child is engaging in school avoidance behaviour.

    Conversely, if you have achieved success and overcome difficulties and if you like your work or school, then you can trust your own viewpoint and hold on to the belief that you are really, medically ill a bit longer in the face of relentless suggestions otherwise.

    I think it is also likely that people who don’t have particularly demanding or rigid jobs or ambitious goals can better accommodate the reduced productivity that goes with a mild case of CFS. So it is likely that a driven athlete or professional will be more motivated to continue to seek a diagnosis and treatment than a laid back housewife with older children who can sweep the floor less often and can sometimes lie down when she needs to.

    This idea that CFS is the disease of high-achievers is a harmful myth. It suggests a significant behavioural cause. It therefore infers the patient’s faulty thinking and behaviour is to blame and helps to direct research efforts away from biomedical causes.

    Oddly, this myth seems to sit happily beside a myth that CFS is the disease of wealthy housewives with the theory seeming to be that they don’t have anything better to do than have a mysterious illness. The only common factors in these myths is an attitude of dismissively blaming CFS sufferers and a reliance on faulty reasoning rather than good science.​
    Last edited: May 12, 2015
    JaimeS, TiredSam, PennyIA and 7 others like this.
  7. Effi

    Effi Senior Member

    @Hutan Linking a patient's character to their disease just because the medical community doesn't have any answers is SO frustrating!! I have actually heard two types of characterizations. One is that me/cfs patients are 'over-achievers', aka 'it's your own fault! you shouldn't have worked so hard!'. And the other one is that me/cfs patients are all insecure perfectionist, aka 'it's your own fault! you shouldn't have tried so hard at life!'. Both are complete BS imho. Even if you don't fit into these categories, people will say: 'oh, but the fact that you HAVE this is proof that you have these character traits.' They have all the answers, how convenient!

    And I've seen another one too. If you're a positive person, and despite of the fact that you feel absolutely horrible each second of every day, you keep a smile on your face, because that is just how you are, people will say: 'why can't you just give in to how you feel? you're trying too hard! you'll never get better if you keep forcing yourself to be positive!' Whereas if someone is negative they'll say: 'well, if you're gonna be this negative you're just keeping yourself in this situation!'

    Long story short, we never win... I long for the day we'll have a biomarker and this madness is put to an end.
    JaimeS, mango, Hutan and 1 other person like this.
  8. SOC

    SOC Senior Member

    Excellent piece, @Alea Ishikawa! I look forward to the fully referenced version. :)

    One small suggestion -- I'd prefer to see every reference to the disease (except in direct quotes from external sources, of course) be ME/CFS or ME/CFS/SEID rather than just CFS. Since I'd love to send this out to friends, family, doctors, strangers ;) (with your permission), and I know many of their brains shut down as soon as they see "CFS", I think it will make a bigger impression with the variety of known names.
    JaimeS, Valentijn and L'engle like this.
  9. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I personally probably wouldn't use it if it used the term SEID as I hope that goes away but I agree it would be a lot better if ME/CFS was at least in all those 10 bolded point headings.
    JaimeS likes this.
  10. Alea Ishikawa

    Alea Ishikawa

    I did try to get some edits, but I was crashing something rough that week. Either my computer or my brain was givin' out. :whistle:

    @taniaaust1 - Added. I originally linked the study via the cross symbol thingie, but putting it in the paragraph below might be more effective for the casual reader.

    @Hutan @Effi - Though some patients are overachievers by nature, not all are. If the statement bothers you, you can edit "many" to "some." I just ask that you mark yourself as an editor or something when you go to share it. You can also remove sections, paragraphs, etc. if that helps you. I just wanted to get the information out there. :)

    @SOC @taniaaust1 - I edited some of the CFS references to "ME/CFS," but kept others where the linked literature used "CFS" specifically, that I was immediately aware of. If you prefer, you can change CFS to ME/CFS (or [ME/CFS] if in a quote). I just ask that you mark yourself an editor or "poster has edited all mentions of 'CFS' to 'ME/CFS' to reflect global terminology'" or something.

    I am sometimes overzealous, and sometimes my body does not cooperate. I think converting the links to proper citations will be quite a project, and, since the information is out there, is now set on the backburner.

    I am glad to know people are getting some use out of it.
    sarah darwins, Effi and SOC like this.
  11. JaimeS

    JaimeS Senior Member

    Silicon Valley, CA
    Thank you so much, Alea!


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