Why Patients with ME are Housebound and Bedbound

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Nov 22, 2008.

  1. mezombie

    mezombie Member

    Jodi Bassett has just completed an excellent paper on how to understand the limitations of people with ME. She also gives tips regarding appropriate responses.


    [This Message was Edited on 11/22/2008]
  2. Spinetti

    Spinetti New Member

    I couldn't get the above link to work when I pasted it. This one worked


    Thanks, mezombie,
  3. jasminetee

    jasminetee Member

    That is a good article. It's so hard to explain this aspect of our illness. She did really well.

    Thanx for the Link.

  4. Bunchy

    Bunchy New Member

    This (hummingbirdsguide) is such a good website for both patients and carers as well as disbelieving people. I might email this article to my family and friends.

    Love Bunchy x
  5. mezombie

    mezombie Member

    Thanks for pointing out the problem with the link, Spinetti.

    I edited my original post.

    Teejkay and Bunchy: I'm glad you agree this is an excellent piece. Jodi did a great job, as always, IMHO.

  6. greatgran

    greatgran Member

    I read the article, but guess my brain isn't functioning , is she saying that ME and CFS aren't the same?

    I always thought they were the same but since reading the article from what I understood they are different.

    Need your input,
  7. tansy

    tansy New Member

    Jodi's site is an excellent source for information on ME and for explaining the differences between CFS and ME.

    ME was well defined decades before the construct of CFS by the CDC and it's adoption in other countries. Even the CDC admits ME is not CFS; it's a distinct disease as against the vaguer definitions of CFS in current use.

    tc, Tansy

    PS I agree that CFIDS and ME are the same disease; CFIDS came into usuage after the CDC's less well defined definitions of CFS. CFS covers a heterogenous patient population and that's not helpful to anyone.

    [This Message was Edited on 11/23/2008]
  8. greatgran

    greatgran Member

    For some reason I always tought they were the same. Thank you for your info. I do think cfs is neurological sure hope someday we will find an answer.

  9. TeaBisqit

    TeaBisqit Member

    I believe CFIDS and ME are the same, but what the site is trying to say is that the old definition of CFS, which was never CFIDS is completely wrong and different. And this is where the confusion comes in. And unfortunately, when I sent my relatives to the site so they could learn about the disease, they deliberately misread it and said I was faking my illness and that CFS is fake disease. So the site actually did far more harm in my case than good.

    My official diagnosis that I got my disability for is CFIDS, Chronic Fatigue Immune Dysfunction. I was never diagnosed with plain CFS. My symptoms are a classic case of ME, though. And I was later diagnosed with CFIDS with overlapping FM and Advanced Lyme disease. But many, many doctors have admitted that I have CFIDS. Judging from my symptoms, and after having read many things about ME over the years, I would have to say I am classic ME. And I believe CFIDS and ME are the same disease.

    CFS was never immune dysfunction. It was mostly thought of as a mental depression sort of thing. And it's something that never should have been associated with our illness. It has done nothing but harm over the years. Many people do have plain fatigue, but they don't have what we have and their fatigue could stem from a million other sources. That's why a name change should have been done years ago.
  10. mezombie

    mezombie Member

    Those of us who live in the US and have Myalgic Encephalomyelitis are in a tough situation.

    If we got sick after 1988, it's rare for of us to be diagnosed with ME because doctors (and the US gov't) don't recognize ME.

    In the mid-1980s, there were several outbreaks of ME, notably in Incline Village, Nevada, and Lyndonville, New York. The Centers for Disease Control investigated the Incline Village outbreak, but failed to recognize it as ME. Despite the input of several doctors very familiar with ME who argued that this was a classic ME outbreak, the CDC came up with the name "Chronic Fatigue Syndrome" along with a very vague definition based on exlusions of other diseases and a list of symptoms, fatigue being the most prominent one for this disease.

    As a result, US doctors unfamiliar with ME but aware of the Incline Villlage cluster diagnosed those that fit that outbreak with CFS. But other patients, who did not have ME but had fatigue as a primary symptom, received that diagnosis as well. The result is that CFS a mishmash of illnesses, including misdiagnosed ME, other missed diagnoses (as fatigue is a common symptom for many known illnesses), and possibly some newly emerging diseases.

    The situation keeps getting worse as the CDC continues to redefine CFS to the point that anyone who feels "unwell" for at least a month could be diagnosed with CFS.

    Some of us with ME are diagnosed with "atypical Multiple Sclerosis", "organic brain syndrome", or other diagnoses that really mean "we don't know". My diagnosis was "connective tissue disorder", aka "almost Lupus", for several years.

    When I saw Dr. Cheney, one of the doctors who was in the midst of the Incline Village breakout, he told me I had CFIDS (Chronic Fatigue Immune Dysfunction Syndrome), a name used by doctors and patient advocates in the late 80s to late 90s to try to distinguish those that fit the Incline Village disease profile from the CDC's made-up and inaccurate definition.

    But many with ME, are, unfortunately, not examined and tested for ME and are told they have CFS.

    Teabisquit, I am so sorry that sending your relative to the Hummingbirdsguide website backfired! Here's a webpage that might be more helpful:



  11. TeaBisqit

    TeaBisqit Member

    It wasn't your fault. They are incredibly evil, cold sociopathic people. And there is no convincing any of them that the disease is real or that people can be disabled and still look well. They've been leaving me be of late, so I'm hoping it stays that way.

    I wish we had an explanation for why people accuse us of faking our illness and why they refuse to believe in a disease that is now pandemic and we all present with most of the same symptoms worldwide. You would think they would be afraid of catching it? I'll never understand the mentality.
  12. mezombie

    mezombie Member

    I know what you mean, Teabisqit! I have the same problem with my family.

    I don't understand this attitude either.
  13. gb66

    gb66 Well-Known Member

    How can you be diagnosed with ME. Is there a test to tell you if you definitely have it? I understood the article to be saying that if you have these same symptoms but nothing physically wrong shows up on any tests that you aren't really sick. That CFS is not real? Is this what it says or did I read it wrong. That's a terrible thing to say about all the people that are ill with CFS. Of course it's real. My body is a mess since I came down with it 30 years ago and all of the bloodwork always comes back normal.
  14. mezombie

    mezombie Member

    Oh dear, Gb66! Of course you are sick! Of course your symptoms are real!

    Jodi Bassett is not saying that those diagnosed with CFS aren't sick; she's saying that those told they have CFS may have something other than ME.

    And, unfortunately, some doctors will diagnose people with CFS without carefully considering other diseases that have similar symptoms but are hard to diagnose.

    Jodi is very much an ME advocate and is very upset (justifiably so) that people with ME aren't properly diagnosed and treated.

    There are tests for diagnosing ME.

    From Jodi's website, Ahummingbirdsguide.com:

    Some of the series of tests which can (in combination) help to confirm a M.E. diagnosis include:

    SPECT and xenon SPECT scans of the brain

    SPECT scans have demonstrated decreased cerebral blood flow most frequently in the frontal, parietal, temporal, occipital and brain stem areas of the brain. These abnormalities have also been shown to correlate with clinical status. Dr Byron Hyde MD adds that, ‘I do not describe a patient as having M.E. unless there is an abnormal SPECT. If the SPECT is normal, I often repeat it along with xenon SPECT. If the brain scans remain normal, I conclude that it is [not] M.E.’

    MRI scans of the brain

    Punctate, subcortical areas of high signal intensity consistent with edema or demyelination were identified by MRI in over 78% of M.E. patients (similar to those seen in MS). Research has shown that an estimated 80% of M.E. patients will have abnormal MRI scans. M.E. patients with abnormalities on MRI have been reported as being more severely impaired than those without such abnormalities.

    PET scans

    PET scans have shown decreased metabolism of glucose in the right mediofrontal cortex and generalised hypoperfusion of the brain with a particular pattern of decreased neuronal metabolism in the brain stem.

    Neuropsychological testing

    Of the CNS dysfunctions that make up M.E., cognitive dysfunction is easily one of the most disabling characteristics of the illness. Neuropsychological testing can be used to identify cognitive dysfunction and/or to confirm a M.E. diagnosis. It should focus on the abnormalities known to differentiate M.E. from other causes of organic brain dysfunctions. Dr Byron Hyde MD explained that:

    There are neuropsychological changes that are measurable and demonstrate short-term memory loss, cognitive dysfunctions, increased irritability, confusion, and perceptual difficulties. There is usually rapid decrease in these functions after any physical or mental activity. Neuropsychological changes must be measured in relation to estimates of prior achievement. This feature may improve over a period of years in patients with adequate financial and social support and can be made worse by chronic stressors. The neurophysiological changes are those observed by a qualified Neuropsychologist with experience in examining this type of disease spectrum. Some of the deficits that a Neuropsychologist should consider examining include: (a) word finding problems, (b) Subtle problems with receptive and expressive aphasia, (c) Decreased concentration, (d) Distractibility and the decreased ability to process multiple factors simultaneously, (e) Dyscalculia, (f) Decreased fine and gross motor problems, (g) Dysfunction of spatial perception, (h) Abstract reasoning, (i) Compromised visual discrimination, (j) Sequencing problems. In Cochran’s Q Neuropsychological tests there is an increased observation of significant problems in both immediate and delayed verbal recall. In Dr Sheila Bastien’s investigations, over 50% of M.E. patients have delayed visual recall, TAP dominance, TPT N-Dominance and 40% or more have abnormalities of Immediate visual recall, Tap N-Dom, Grip N Dominance, & grip dominance problems.

    EEG brain maps and QEEG brain maps

    95% of M.E. patients have been found to have abnormal cognitive-evoked EEG brain maps. But Dr Byron Hyde MD argues that QEEG brain maps are even more accurate and that they, ‘have been able to demonstrate not only lack of normal activity in M.E. patients but migration of the normal activity centers from injured areas to different parts of the brain.’

    Neurological examination and the Romberg or tandem Romberg test

    Most M.E. patients have abnormal neurological examination. The Romberg test is a useful test of brain stem function, Professor Malcolm Hooper explains that, ‘Dr Paul Cheney found that 90% of patients have an abnormal Romberg versus 0% of controls.’

    Tests of the immune system

    The immune system abnormalities in M.E. patients fit the immune pattern seen in viral infections. Specific findings include (but are not limited to): Increased numbers of activated cytotoxic T cells (most patients have evidence of T-cell activation), Low natural killer cell numbers/percentage and function (cytotoxicity), Elevated immune complexes, Atypical lymphocyte count, Significantly reduced CD8 suppressor cell population and increased activation marker (CD38, HLA-DR) on CD8 cells, Abnormal CD4/CD8 ratio, Elevations of circulating cytokines and Immunoglobulin deficiencies (most often IgG 1 and IgG 3)

    Erythrocyte Sedimentation Rate (ESR)

    An unusually low sedimentation rate of <5mm/hr is common in M.E. ESR rates as low as 0 have been documented in M.E. patients, and levels of 1 and 2 are very common. Dr Byron Hyde MD reported in 1989 that, "To my knowledge, there are only five diseases that have a pathological low sedimentation level: Myalgic Encephalomyelitis, sickle-cell anemia, hereditary sperocytosis, hyper-gammaglobulinemia and hyper-fibrogenemia.’

    Insulin Levels and Glucose Tolerance Tests

    Derangement of insulin response is a frequent finding in M.E. patients. Glucose tolerance curves are often abnormal.

    24 Hour Holter Monitor

    A 24 hour Holter monitor (a type of heart monitor) may show repetitively oscillating T-wave inversions and/or a flat T-wave may be found. Holter monitors may also show heart rates as high as (or higher than) 150 beats per minute as an immediate or delayed response to the patient maintaining an upright posture, or at rest. Heart rates as low as 40 beats per minute may also be observed (during sleep).

    Tilt Table Examination

    Orthostatic intolerance is very common in M.E. patients and may manifest as one of, or a combination of the following: Neurally mediated hypotension (NMH): Postural orthostatic tachycardia syndrome (POTS) or Delayed postural hypotension. If a tilt table is not available, doctors may prefer to do a ‘poor man’s tilt table test’ (as described in the full-length version of this text).

    Dr Byron Hyde MD explains that testable vascular and cardiac dysfunction is the most obvious set of dysfunctions when looked for and is probably the cause behind a significant number of M.E. complaints, and that all moderate to severe M.E. patients have one or more or multiple of the following vascular dysfunctions:

    Severe postural orthostatic tachycardia syndrome (POTS)
    Cardiac irregularity on minor positional changes or after minor physical activity
    Raynaud’s phenomenon (vasoconstriction of small arteries or arterioles of extremities, with change in colour of the skin, pallor and cyanosis),
    Circulating blood volume decrease (up to 50%)
    Bowel dysfunction caused by vascular dysfunction (vascular dysfunction may be the most significant causal basis of the multiple bowel dysfunctions occurring in M.E.),
    Persantine effect in M.E. patients
    M.E. associated clotting defects
    Anti-smooth muscle antibodies (This is an antibody to the muscle tissue in the arterial bed. It is elevated in about 5% of M.E. patients)
    Cardiac dysfunction (There are a large number of cardiac dysfunctions that can regularly appear in M.E.).
    Note however that the primary vascular change in M.E. is seen in abnormal SPECT brain scans.

    Exercise testing and chemical stress tests

    Cardiopulmonary exercise testing is widely used for the diagnosis (and functional assessment) of various cardiac and metabolic disorders and can also be used in the diagnostic evaluation of M.E. patients. Heart rate and blood pressure responses during the exercise test may reveal abnormalities specific to ME including: lower cardiovascular and ventilatory values at peak exercise (patients only being able to attain half the expected maximal workload and oxygen uptake compared to sedentary controls), elevated resting heart rates and an inability to reach maximum age-predicted heart rates. As exercise tests are not appropriate for many M.E. sufferers, Dr Byron Hyde MD writes: ‘Patients with ME frequently cannot do exercise tests, and so I then do chemical testing as a second best.’

    Physical Exam

    There are also a variety of abnormalities visible on physical exam in M.E. patients. These abnormalities are not usual in healthy patients but they are also found in people with other organic illnesses (so they are not specific to M.E.). The post-exertional paralytic muscle weakness unique to M.E. should also be tested for; a diagnosis of M.E. should never be made without this characteristic being present. Physical signs of illness commonly observed in M.E. patients include:

    Nystagmus; nystagmus is jelly-like and variable (15% of M.E. patients will have nystagmus)
    Sluggish visual accommodation and unequal pupils and contrary pupil reaction to light
    A labile blood pressure (sometimes as low as 84/48 in an adult at rest)
    Shortness of breath (particularly on exertion)
    Subnormal temperature
    Cogwheel movement of the leg on testing, and muscular twitching or fasciculation
    Hyper-reflexia without clonus
    Destruction of fingerprints is sometimes seen (atrophy of fingerprints is due to perilymphocytic vasculitis and vacuolisation of fibroblasts)
    Ghastly pallor of face with frequent lupus-like submaxillary mask or facial vasculoid rash
    Parkinsonian rigidity of facial expression
    Scanning, disjointed speech, or speech reversals
    Nasal passage obstruction and inflamed areas around tonsillar pillars
    Sicca syndrome of conjunctiva and mucous membranes
    Frequent equivocal Babinski/plantar reflex on one side

  15. gb66

    gb66 Well-Known Member

    Mezombie, Thanks for clearing that up for me. I think I must have read another article on there as well as the one mentiioned. I always thought CFS and CFIDS were used in the same way, that it all was the same disease. I have the symptoms for CFIDS but have always called it chronic fatigue symdrome. Is there a difference? Mine was a sudden flu like onset over 30 years ago, that gradually has worsened over time. I am more disabled now than when it started. I started out with fever, pain, weakness, disorientation, extreme fatigue, and all the other good stuff. Over time, I've had less good days and more bad days to the point there are only so-so days, bad days, and worse days now. Also MCS has increased greatly. I wonder if I should have some of these other tests done. I wouldn't know where to begin as I don't have a good doctor anymore and there are no specialists in the area. GB66