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Lessons from ME/CFS: Finding Meaning in the Suffering
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Is it worth explaining the difference between ME and CFS to the public??

Discussion in 'Action Alerts and Advocacy' started by Tulip, Apr 9, 2011.

  1. rlc

    rlc Senior Member

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    CFS Misdiagnosis Dr Mirza's tests detail

    This is a more detailed explanation of why Dr Mirza methods explained in The myth of chronic fatigue syndrome by Shirwan A Mirza http://www.bmj.com/content/334/7605/1221.extract/reply and NICE and CDC miss the boat by Dr Shirwan A Mirza http://www.bmj.com/content/335/7617/446.extract/reply pick up so many misdiagnoses, with links to additional information

    The first thing to note is that Doctor Mirza is an Endocrinologist, therefore a Specialist, which means that his patients are referred to him by family doctors, who for them to do this, must of taken their patients reasonably seriously, and done a reasonable amount of testing, which explains why he is not claiming to be finding a large amount of conditions like missed HIV, Hep C, liver, kidney diseases etc. Most GPs who bother to look can find these things. He is also just explaining the most common misdiagnoses, obviously there are other less common things that get misdiagnosed as CFS but the tests he explains will pick up the majority of the misdiagnosed!

    One of the main reasons Dr Mirza is able to find a so much higher percentage of misdiagnosed people then the 40% found in this article http://www.rcpe.ac.uk/journal/issue/journal_40_4/newton.pdf is because he is using the new correct reference ranges for the likes of TSH (Thyroid) Glucose, Vitamin D and B12.These are not his opinions that the reference ranges are wrong, they are scientific facts, established by leading researchers, which are unfortunately being ignored by laboratories and the majority of doctors are completely unaware of it, It is the use of wrong reference ranges that is leading to so many people being told that their tests are fine, so it can only be CFS, when the reality is there tests when measured against the correct reference ranges show that they are very sick.

    1 As an example he is saying that the reference range for TSH should be between 0.3 and 2.5 because researchers have found that when the original reference range of 0.5 to 5.0 was decided on, they had failed to exclude people with mild hypothyroidism which had lead to the reference range being seriously skewed. This has lead to a situation where people get tests results like TSH 3.7 the doctor says its under 5.0 so its fine; when the reality is the patient has a thyroid problem and is misdiagnosed.
    These researchers have then worked out how many people are having their thyroid diseases missed, when the TSH level is set at 5.0 it is estimated that 13 million Americans have Hypothyroidism. If the reference range for TSH was reduced to 2.5 it is estimated that approximately between 23 and 28 million extra Americans would be diagnosed with hypothyroidism and that these people are not getting the medication they should. Info on this here http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm
    So whats been happening to all these millions of people? Their being misdiagnosed with CFS, or given some bogus Psychiatric diagnosis like depression etc, and put on psyc meds. Information on further testing that may need to be done to properly diagnose thyroid problems T3; T4 etc can be found here http://thyroid.about.com/od/gettestedanddiagnosed/a/testdiagnose.htm Dr Mirza explains more about treating thyroid problems in the article Unveiling the mysteries of the Thyroid found here http://www.bmj.com/content/337/bmj.a801.extract/reply#bmj_el_200193

    2 The same situation is happening with Vitamin D, the old reference range that said that Vitamin D deficiency occurred at levels under 20ng/ml (50nmol/L) was established because at levels below this people were at risk of developing Rickets; this reference range has nothing to do with the levels needed for optimum health. Current research shows that people should have levels between 50ng/ml - 80ng/ml (125nmol/L - 200nmol/L) well over double the old range, so once again people are being tested and the diagnosis is being missed, and even when they fail the test under the old ranges they are only given enough treatment to get them above 20ng/ml so they arent given enough to be cured.
    It is important to know that Vitamin D isnt a vitamin, its a Secosteriod Hormone, and a lack of it is a massive problem that can ultimately lead to death. It has so far been found to have over 200 roles in the body; you need it to absorb Phosphorus without it your ATP wont work! ATP is like little batteries inside every cell in your body definition of it here http://www.ihealthdirectory.com/adenosine-triphosphate/ without sufficient Vitamin D every cell in your body is not working properly!
    Mild symptoms of vitamin D deficiency include insomnia, blurry vision, mouth and throat pain, drastic weight loss and mood swings. Vitamin D deficiency can also mess up your digestive system, leading to stomach problems such as constipation and diarrhea. Because of the chemical imbalance that it brings, people suffer from irritability and mood changes which might lead to depression over the long haul.
    Other mild symptoms associated with low levels of vitamin D are fatigue, weak bones, feeling tired even after a long nights sleep, and muscle pain. You might feel painful throbbing of the limbs and experience gradual tooth decay. There is a lot of evidence linking it to being a cause of Depression and Mental illness.

    If left untreated for a long period of time, these symptoms will graduate into something far more serious. Like osteoporosis and Rickets, News research is showing it to be a likely cause of numerous Cancers, Heart disease, Diabetes and auto immune diseases such as Lupus. Dr Mirza explains more about Vitamin D in his article Vitamin D deficiency found here http://www.bmj.com/content/336/7657/1318.extract/reply#bmj_el_198052
    One of the most interesting thing that was discovered recently is researchers found that the T cells rely on vitamin D in order to activate and they would remain dormant, 'nave' to the possibility of threat if vitamin D is lacking in the blood. So no Vitamin D no immunity hence the likely cause of all the chronic EBV, CMV etc infections more info here http://www.sciencedaily.com/releases/2010/03/100307215534.htm more info on correct Vitamin D levels here http://www.thorne.com/altmedrev/.fulltext/13/1/6.pdf and here http://www.vitamindcouncil.org/health/deficiency/am-i-vitamin-d-deficient.shtml

    Vitamin D deficiency is exceedingly common because of the tendency in the western world to work in side and to use sunscreen, even in Australia using the out of date reference ranges its estimated that half the population is deficient, and one fact that the majority of doctors have never got there head around, is that sick people tend to not be able to get outside in the sun, so their Vitamin D levels are guaranteed to drop into severe deficiency. Dr Mirza States that nearly 70% of fibromyalgia is actually misdiagnosed vitamin D deficiency, information about this here http://www.easy-immune-health.com/fibromyalgia-and-vitamin-d.html#axzz16q2gPmFV other diseases that get misdiagnosed as fibromyalgia can be found here http://www.wrongdiagnosis.com/f/fibromyalgia/misdiag.htm

    3 Again with B12 the reference ranges are wrong in most labs, leading to people being misdiagnosed. B12 deficiency should be diagnosed if below 300pg/ml but most labs say 180, Like Vitamin D, B12 deficiency is not a minor illness it will ultimately lead to death, symptoms of B12 deficiency; Studies have shown that a deficiency of vitamin B12 can lead to abnormal neurologic and psychiatric symptoms. These symptoms may include: ataxia (shaky movements and unsteady gait), muscle weakness, spasticity, incontinence, hypotension (low blood pressure), vision problems, dementia, psychoses, and mood disturbances. Researchers report that these symptoms may occur when vitamin B12 levels are just slightly lower than normal and are considerably above the levels normally associated with anaemia.Other symptoms can be found here http://vitamins.lovetoknow.com/Vitamin_B12_Deficiency_Symptoms and here http://www.essortment.com/all/vitaminbdefi_rndj.htm info on reference range being wrong here http://webcache.googleusercontent.c... b12 referance range&cd=2&hl=en&ct=clnk&gl=nz

    4 The situation with Glucose testing is that the recommendations for reference ranges have been to lower them to the levels that Doctor Mirza explains, this has started to happen over the last few years, but anyone who has them done needs to check that the new reference ranges are being used. And anyone who has had them done more than a few years ago will have to get their results checked against the new reference ranges because the correct diagnosis may of been missed, Another Vital point that Doctor Mirza makes is that the Fasting Glucose test is not sufficient to detect glucose intolerance and the 2 hour glucose tolerance test (OGTT) must be done, otherwise the diagnosis will be missed, unfortunately most people only get the given the fasting glucose test. The correct reference ranges can be found here http://www.networkreferencelab.org/nrl_content.aspx?id=3233 the symptoms of pre diabetes can be found here http://www.diabitieslife.com/diabetes/diabetes-care/type-1/causes-and-symptoms-of-pre-diabetes.htm

    5 Although Dr Mirza doesnt state this in his articles the reference ranges used to check for Hemochromatosis are also wrong in a lot of labs. The range used for Transferrin saturation in a lot of labs can be as high as 55% the correct range is 44%, some labs range for Ferritin are around 400 it should be 150 otherwise the diagnosis can be missed. Correct information for diagnosing hemochromatosis can be found here http://www.ironoverload.org/Diagnosis.htm

    Until 1996 hemochromatosis was considered to be an extremely rare fatal disease that mainly affected old men, even though it was known both how to test for, and treat it. In 1996 researchers discovered the genes that caused it and then tested large populations for these genes and discovered that it is the most common serious genetic illness in the world and effects about 1 in every 250 people and that millions of cases of it had been missed and lots of people had died needlessly.
    You would think that this would of lead to a massive change in attitude and knowledge of it amongst the medical community, however most doctors including some of those that specialise in it still know very little about it. It is estimated that an average physician will see an unrecognized case of it every two weeks and yet they are unlikely to diagnose a single case in their career. It is believed that only 2% of the people in the world, who have it, have actually been diagnosed. To make matters worse most doctors even if they do suspect it, are under the false belief that ferritin levels have to be very high, , in a lot of people high ferritin is a very late sign, the most accurate test is transferring saturation which if this is high on two occasions, then it is 98% diagnostic of hemochromatosis a lot of doctors never test this, A lot of doctors also rely on genetic testing to diagnoses Hemochromatosis, but only two of the most common genes are tested for, there are another 40 genetic variations that dont get tested, it is estimated that 10 to 15% of the people who have hemochromatosis have the genetic variations that dont get tested for and the diagnosis gets missed! An Article about how it is easily misdiagnosed as CFS here http://www.haemochromatosis.org/chronic-fatigue-syndrome-fibromyalgia.html some more of the vast array of symptoms that it can cause in different people can be found here http://en.diagnosispro.com/disease_...manifestations-hemochromatosis/14667-104.html It can also cause Diabetes, Adrenal insufficiency, heart failure and liver failure, it is fatal if not treated.

    6 The situation with Celiac Disease is that although there is no problem with reference ranges, there is however an average of a ten year delay in diagnosis simply because doctors dont think of it, even though it affects about one in every hundred Caucasians. The situation is further complicated by the fact that the blood test for it has a high false negative rate, a small bowel biopsy should be done by endoscopy if there is any doubt, but unfortunately this isnt done in a lot of cases and the diagnosis is missed. Dr Mirza explains Celiac disease in more detail in the article Celiac Disease The Great Imitator found here http://www.bmj.com/content/338/bmj.a3058.short/reply

    Info on how to diagnose celiac here http://celiacdisease.about.com/od/diagnosingceliacdisease/a/celiacdiagnosis.htm Another complication is that even when diagnosed, because of the continual use of wrong reference ranges for Vitamin D and B12 the patients are not aggressively supplemented to cure the nutritional deficiencies caused by the celiac and can continue to suffer from these. Symptoms of celiac can be found here http://celiacdisease.about.com/od/symptomsofceliacdisease/a/celiacsymptoms.htm

    7 Adrenal Insufficiency although it shouldnt, often presents a major diagnostic dilemma, caused by the fact that a lot of doctors knowledge on how to diagnose it is limited to say the least, the major problem is they dont know that cortisol readings within the normal range do not rule out Adrenal insufficiency. They will get tests results back with results saying something like Cortisol 15mcg/dl (reference range 9-25mcg/dl) and say the patient is fine when the reality is the patient may be dying. Here is what should be being done When adrenal insufficiency is suspected, blood for an AM cortisol level along with an ACTH level and an aldosterone level is drawn. With a normal range of 9-25, mcg/dl, blood cortisol levels higher than 19 generally rule out the possibility of adrenal insufficiency. Levels lower than 3 suggest adrenal insufficiency, and levels between 3-19 are indeterminate. In primary adrenal insufficiency, the blood ACTH level is high. A low cortisol with a high ACTH is sufficient to diagnose primary adrenal insufficiency; a low ACTH with a low cortisol level is seen in secondary adrenal insufficiency. Further tests can be used to differentiate pituitary from hypothalamic causes in secondary conditions.
    Regardless of the cortisol level, if adrenal insufficiency is highly suspect, an ACTH stimulation test is performed. In this test the patient is given an injection containing cosyntropin, a synthetic form of ACTH. Cortisol levels are tested prior to administering the drug and at 30 and 60 minutes after the ACTH is given. In adrenal insufficiency the rise is blood cortisol levels is negligible. A longer version of the test can be used to determine if abnormal results are due to pituitary or adrenal disease. Full article here http://www.suite101.com/content/adrenalinsufficiency-a1543

    8 Sleep Apnea is often missed for the simple reason that it often isnt even being considered as a possible diagnosis, how to diagnose Sleep Apnea can be found here http://www.nhlbi.nih.gov/health/dci/Diseases/SleepApnea/SleepApnea_Diagnosis.html Symptoms can be found here http://www.nhlbi.nih.gov/health/dci/Diseases/SleepApnea/SleepApnea_Signs.html An important thing that is often missed, is to find the underlying cause of the sleep Apnea there are many of them which if they are missed the patient will continue to be sick even when the sleep Apnea has been treated. Causes of Central Sleep Apnea can be found here http://en.diagnosispro.com/differential_diagnosis-for/sleep-apnea-central-type-causes/11648-154.html Causes of Obstructive sleep Apneia can be found here http://en.diagnosispro.com/differen...-apnea-obstructive-type-causes/11638-154.html A lot of these conditions are very serious and need to be diagnosed and treated if the patient is to get better.

    9 Benign Paroxysmal Positional Vertigo is an imbalance of the inner ear that causes symptoms such as dizziness, vertigo, imbalance, nausea and nystagmus ( involuntary eye movements) information on it can be found here http://www.dizziness-and-balance.com/disorders/bppv/bppv.html please dont try things like the Epley manoeuvre used to treat it without first consulting with a doctor, just in case you have something else that doing this may make worse. Information on the Romberg test that Dr Mirza mentions for testing for it can be found here http://www.neuroexam.com/neuroexam/content.php?p=37 again make sure you get a doctor to do this, this test can also be useful for testing for true M.E but be aware failing it can indicate numerous conditions some of which can be found here http://www.wrongdiagnosis.com/p/parry_romberg_syndrome/book-diseases-2a.htm

    It is important to note that a lot of people will have combinations of these illnesses as this review by one of Dr Mirzas patients shows http://www.insiderpages.com/doctors/Shirwan-A-Mirza-MD-Auburn , most people who have been sick for a long time with anything will also be Vitamin D deficient because of lack of sun exposure, People with celiac will also have B12, Vitamin D deficiencies, iron etc People with hemochromatosis may have Adrenal insufficiency and Diabetes because it can cause all these, People with hypothyroidism may also have B12 deficiency and Benign Paroxysmal Positional Vertigo etc, etc.

    Added to this a lot of people are being prescribed a lot of medications that they dont need because the correct diagnosis has been missed e.g. sleep meds, pain meds, anti depressants etc all of which have side effects and interact with each other, they are also often taking large amounts of supplements which can have side effects, react with other medication and depending on what the true condition is may be extremely detrimental to their health. As an example of how bad some supplements can be, even Vitamin C which is almost universally considered harmless, if it is given for a long period of time to someone with undiagnosed hemochromatosis because vitamin C dramatically increases the absorption of iron it can knock decades of the life of someone with Hemochromatosis. So all these meds and supplements often worsen the patients health.

    Because people with these kind of long term illnesses often have impaired immune systems they also get Chronic EBV, CMV,HHV6 infections etc, plus colds, flues pneumonias etc, end result of all this is very sick people! Plus the understandable depression, stress and anxiety symptoms that go with being so sick.

    The effect of Vitamin D deficiency on the immune system has already been discussed, however most of the diseases mentioned in Dr Mirzas articles have been found to also profoundly affect the immune system and cause measurable NK cell dysfunction.
    Here are some scientific articles on this

    B12 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1905232/

    Hemochromatosis http://www.ncbi.nlm.nih.gov/pubmed/11045759?dopt=Abstract

    Adrenal insufficiency http://onlinelibrary.wiley.com/doi/10.1002/eji.200526128/abstract

    Celiac http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1954856/

    Sleep Apnea http://ajrccm.atsjournals.org/cgi/reprint/168/2/242.pdf

    Thyroid diseases http://www.ncbi.nlm.nih.gov/pubmed/1581468

    All the best
  2. floydguy

    floydguy Senior Member

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    Thanks RLC. Been checked for all that.

    Okay with B12, on the high side actually
    47 Vitamin D
    Known sleep apnea

    Aside from that all normal. I don't think he is in the same league as Hyde. I can't believe the avg PCP wouldn't have checked for all the things suggested by Dr. Mirza. Based on what he's said it would appear I've gotten a better work up than most of his patients. To me that's just routine examination.

    I am not sure I would agree with the thyroid part. Again that's often the first thing docs want to mess with and I am not sure that it's a great idea in the long run. I would advise caution unless people's levels are really messed up. I think too many don't know what else to do - especially if you have abnormally low body temp like I do - even if the thyroid otherwise appears to be okay. That is one of the medications I wished I hadn't agreed to.
  3. floydguy

    floydguy Senior Member

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    I even had the GI scope for celiac! Twice!
  4. rlc

    rlc Senior Member

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    Hi Floydguy, heres a few links that might help you, is your B12 high without taking B12 supplements? If so you might be interested in this
    http://en.diagnosispro.com/differential_diagnosis-for/vitamin-b12-serum-lab-increased/10103-154.html

    Have you been investigated for causes of your sleep apnea because it is a symptom not a disease! Depending on if it is central type or obstructive type have a look at these http://en.diagnosispro.com/differential_diagnosis-for/sleep-apnea-central-type-causes/11648-154.html and http://en.diagnosispro.com/differen...-apnea-obstructive-type-causes/11638-154.html

    Your Vitamin D looks to be below optimal levels and raising it may help.

    Although low body temperature can be found in ME heres a link to other conditions that should be ruled out in people with low body temperature

    http://en.diagnosispro.com/differential_diagnosis-for/chronic-low-body-temperature/44616-154.html

    As Dr Mirza points out in this article, Hypothyroidism is often treated wrongly suppressing the remaining thyroid function and making the patient a lot worse than they were to begin with. Link http://www.bmj.com/content/337/bmj.a801.extract/reply#bmj_el_200193

    3. The authors recommend a full-dose levothyroxine replacement for almost every one without coronary artery disease. This relies on the assumption that by the time a person develops hypothyroidism, the whole thyroid gland has failed. In our clinical experience, most people with thyroid failure present with partial thyroid failure and they lose thyroid function slowly over months or even years. Prescribing 100 mcg of levothyroxine to a person with a TSH of 10 for example is a recipe for suppressed TSH and symptoms of palpitations, tremors, anxiety, and other symptoms of overtreated thyroid failure. Hashimoto's thyroiditis, which is the precursor for thyroid failure, does not evolve into hypothyroidism over night. Since the hypothyroidism is evolving, the treatment should also be titrated gradually. This is even more cost effective, since it saves many unnecessary phone calls, visits (including visits to the Emergency department), and blood tests.

    In our experience, a levothyroxine dose of 12.5 mcg a day would reduce TSH by 2 digits. This simple math will allow you to have a rough estimate of levothyroxine dose. The goal is to reach a TSH of 1-1.5 mU/L.

    If you achieve a TSH of 1-1.5 and your patient is still symptomatic, do not waste your time on thyroid and look for other reasons for the patient's symptoms.
    Vitamin B12 and vitamin D deficiencies are the most 2 common causes of patients with residual symptoms. One should also look into sleep apnea, depression, adrenal insufficiency, prediabetes (or diabetes), undiagnosed celiac disease with other nutritional deficiencies such as iron deficiency.

    One common mistake that we see is to get blinded by the thyroid and forget that these patients do get other illnesses.

    Its possible that your doctor was right with the idea to treat your thyroid but has given you the wrong amount of medication and made things worse, it would appear that this is a common occurrence.

    Chronic low body temperature and central type sleep apnea are signs of Hypothyroidism

    http://en.diagnosispro.com/differen...-central-type-causes/44616_11648-154_154.html

    I hope theres something in this information that helps relieve your suffering.

    You may think that Dr Mirzas tests are just a standard investigation for someone with fatigue, but the reality is that a lot of people dont get anything like this. Dr Mirza has written these articles because the CDC and the NICE guidlines for how to rule out other diseases before giving a diagnosis of CFS do not include these tests!!! And he is pointing out that even if people do have tests for TSH, Glucose, Vitamin D and B12 because the reference ranges are wrong, people will be misdiagnosed, and things like using Ferritin instead of Transferrin saturation to test for Hemochromatosis will also cause the correct diagnosis to be missed. Then on top of all this is the fact that so many people with a CFS diagnosis have so many failed test results that their idiot doctors ignore, while they completely forget that CFS is supposed to be a medical mystery and nobody is supposed to get a CFS diagnosis if they have failed Tests because it proves that something else is wrong.

    All the best
  5. Tulip

    Tulip Guest

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    Regarding gulf war syndrome, you don't need to have gone to the gulf to get it. All you need is to have had contact with a veteran or someone that has had contact with a vet, as it is a communicable disease. It does share similar symptoms to ME and CFS but it is definitely a different disease. 67% of vets have had children born with deformities, some of them have no arms or legs, this isn't occurring in ME and CFS patients. But Simon Wessely has done the same thing to them as he has to us and ruled it as not existing and all in their minds. Thousands of dollars have been wasted on psych research on gulf war syndrome as has been with ME and CFS.
  6. priya

    priya permanently dislabeled

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    nomenclature of ME and CFS


    if you live in canada and are diagnosed w/ CFS, then you have ME. canada follows the WHO's ICD-10 without clinical modifications, meaning they both fall under G93.3 (a category for neurological illnesses). the canadian criteria diagnose 'ME/CFS'.

    in the US, the old ICD-9 CM is still followed, where ME and CFS are mutually exclusive (meaning if you're diagnosed with CFS, you CANNOT also have ME!). the CDC also states that CFS and ME are two different illnesses, but does not go on to describe exactly what ME is. so, i assume using the canadian criteria for ME/CFS is problematic in the US for studies, etc. as it has been dictated to potential researchers that the 2 are different illnesses.

    since you are canadian, you have the luxury of using whatever name you like. i'm also canadian and am starting to use 'ME' more, as 'CFS' has so many pejorative connotations. and i'm tired of people saying, 'yeah i've been tired lately; i think i have cfs, too'.;)
  7. Boule de feu

    Boule de feu Senior Member

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    You are still here ! =-)

    I am back after a pretty harsh two months (I had to take care of my mom and then she died - very peacefully - in my parents' home).

    I can't believe this thread is still going on! =-)

    I intend to read it all but realize it will take me forever. I will make it my morning reading. Just to let you know that I'm still here.

    Thank you everyone for this passionate and wonderful thread.

    Take care,
    BDF
  8. sandgroper

    sandgroper

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    west australia
    It has been a bit hard for me to follow up on my original post. Just wanted to say that it is good to read responses and to know that people are researching this. It seems to me that those with EDS with ME symptoms may be different in some way but as yet I have not found out whether this is due to have 2 conditions.
  9. Enid

    Enid Senior Member

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    Can't read all this but what is the difference ME/CFS but one of degree only.
  10. Guido den Broeder

    Guido den Broeder *****

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    ME is a disease, known since the outbreak of 1934 in Los Angeles (at the time, as 'atypical poliomyelitis').

    CFS, invented in the late 1980s, is a construct to select patients for research into certain medical complaints.

    You can only fall under the umbrella of CFS if your medical complaints have no known cause. Because ME is a known cause, the CFS label does not apply to ME patients.
  11. Nielk

    Nielk

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    Queens, NY
    Guido,

    What is the cause of ME?
    Sea likes this.
  12. Guido den Broeder

    Guido den Broeder *****

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    Rotterdam, The Netherlands
    As far as I can tell from the available body of research, a latent herpes virus causes the immune system to react poorly to an enteroviral infection. The result: inflammation of the central nervous system (particularly ganglionitis).
  13. Tally

    Tally Senior Member

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    This is how I see it, and please correct me if I am wrong.

    Officially, ME and CFS are two different names for the same disease/group of diseases. Only way to diagnose it is by the symptoms and so researchers now suspect those are multiple diseases with same symptoms. (backed up by the fact that some people get better with antiviral drugs and some by immunomodulators and some not at all)

    CFS does great disservice to us all since it makes it sound like we are just a bit fatigued, and we all know we suffer from plethora of other, very serious and debilitating symptoms.
    In an attempt to distance themselves from the CFS stigma, some patients began to claim those are two different diseases, and ME is more "real", since it had biomarkers, cause is known, etc. when in fact we are all the same boat, we have no idea what the cause nor the cure are (yet :) ).

    Which part did I get wrong?
  14. Bob

    Bob

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    Hi Tally,

    Everyone seems to have a different opinion about the details.
    Some people say that ME is a single distinct disease, as defined in the outbreak areas, but other people say that ME is a spectrum of disorders.
    Some people say that ME is caused by enteroviruses, and others say that the cause is unknown.
    Some people say that ME has distinct symptoms, but others say that there are a range of symptoms in people and during the course of the illness.
    Some people say that ME has a viral cause, others say that it has a viral trigger, and others say that it is an auto-immune disease, or an immune-regulation disease, or an immune-regulation disease caused by a virus. etc. etc.
    Some people say we should get rid of the name 'CFS', but other people say it needs to stay, for various reasons.
    Some people say that the name 'ME' should be used for all 'CFS' patients, but others say that's the worst thing we could possibly do because 'ME' is a distinct disease.

    ME was first diagnosed decades ago, in outbreak areas.
    There are various descriptions of 'ME' from various outbreak areas, which involve describing the details of various symptoms.
    There may be various old diagnostic criteria, or case definitions (my memory fails me with the details, as usual.)
    Some of the details of the descriptions of the outbreak illnesses changed slightly over time.

    Then the CDC went to investigate an outbreak area in the 1980's, and they invented the 1984 Fukuda 'CFS' description of the illness, based on what they say they saw in the patients.
    However, Fukuda is a broad definition, so it includes patients with just long-term 'fatigue', and doesn't specify any distinct symptoms.
    So, over time, CFS has been used to diagnose anyone with long-term fatigue, whatever the cause, and whatever the accompanying symptoms, and whatever the nature of the illness.

    Now the new International Consensus Criteria (ICC) purports to define a disease called 'ME'.
    So we seem to have gone in a full circle, from ME to CFS and back to ME.
    (Although the Hummingbird/Nightingale definition of ME has been around for quite a while.)

    The ICC is quite different to the old definitions of ME, if my memory serves me correctly (again).
    So I question whether the ICC describes the same disease as the old descriptions of ME from the outbreaks.
    But I don't think it's the most important issue, as decades have gone by, and we need to move forwards from where we find ourselves today, and with our current knowledge and understanding.
    I'm not sure how many patients fitting the ICC would be from outbreak areas these days (not sure if there are any stats), but my guess is that it would be a minority from outbreak areas.
    I think some people might question whether 'ME' from an outbreak area is the same as 'ME' in individuals who are not from an outbreak area. But I've not seen any literature comparing the two types of 'ME' patients. Some people also question whether slow-onset ME is the same as fast-onset ME.

    It seems to me that, in the field of ME, there are always a million questions, but very few answers.
    Personally, I'm always very wary of people who say that they know any answers about 'ME', and of people who tell others what the 'facts' are.

    I think that the ICC moves us forwards, because it is more selective than Fukuda, more appropriate, and more carefully crafted, IMO. But some researchers (Mikovits, Lipkin) have already been selecting for disease qualities beyond Fukuda and the CCC, for example, selecting for a viral-like onset, if I remember correctly.

    Bob
    Nielk likes this.
  15. Guido den Broeder

    Guido den Broeder *****

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    All of it.

    ME is officially classified as a postviral disorder of the brain. There is no official classification of CFS.
    ME is a single disease. CFS was never intended as a disease entity (read Fukuda 1994).
    ME is diagnosed with the use of biomarkers (over a dozen are known today, most of them readily available).
    Patients did not begin to claim anything. That is a fairytale invented by Wessely and friends. There was never a time that ME and CFS were considered synonymous by any authority in classification.
    The cause of ME is pretty much known.
    The cure of ME is pretty much known as well.
  16. Nielk

    Nielk

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    I have a little problem with the statement:
    "The cause of ME is prettu much known,
    The cure of ME is pretty much known as well."

    First of all what does "pretty much" mean?

    I it a statement like I am "pretty much" pregnant?

    If this is true that the cause of ME is known as well as the cure than why are there so many
    very ill people with ME suffering every day and why are some even dying from the disease?

    Why are we still on this forum and trying to figure things out in order to be able to manage with this horrific illness?
  17. Guido den Broeder

    Guido den Broeder *****

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    The first definition of CFS is Holmes 1988. It is fairly narrow and about 80-85% of that group has ME. Then the psychiatrists stepped in and new, wider definitions were invented, of which Fukuda 1994 (not 1984) is the one most used in CFS research. Only about 40-50% of the Fukuda group has ME.

    You are confusing Fukuda with the Oxford criteria which indeed require only prolonged fatigue.

    There is no such circle. ME did not become CFS (there is no mention of ME in Holmes 1988 or Fukuda 1994) and CFS did not become ME. What happened was that for some time ME was considered by some to be obsolete and that all research funding went to CFS instead.

    The ICC is more detailed, but it is intended for the same disease. Be aware that all definitions of ME take the meaning of the name as granted.

    Nearly all of them, rather. (Criteria are not the disease itself, so it's never 100% but it can be 99%.) There has been a slight change in symptoms since the enterovirus triggering ME often used to be a poliovirus, which is now rare. With other enteroviruses, there is generally no paresis.

    There is no slow-onset ME. The incubation time of ME is that of the triggering enterovirus, typically 4-7 days.

    Sometimes people really have the answers. The human race would not have survived if it was different.

    Researchers have done that since day 1 (read Ramsay).
  18. Tally

    Tally Senior Member

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    Bob, thank you for the explanation. My thoughts were something along those lines, just not so clear.

    ICC is my bible when it comes to ME.
    ICC recognizes that ME and CFS are used as synonymous terms and sugests sole use of ME.

    Nielk, I share your feelings. If cure is "pretty much" known, then why are we all still sick??? Guido, I don't know where you're getting this.
  19. Guido den Broeder

    Guido den Broeder *****

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    In part, exactly because you have so much problems with these statements. If all ME patients worked together and demanded proper diagnosis and treatment, we would get it.

    As it is, we are no match for other interest groups that feed on our illness.
  20. Guido den Broeder

    Guido den Broeder *****

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    It does no such thing.

    Not from your bible, but from the research that has been done since 1934.

    We are still sick because the voices of the few people that know what they are saying get lost among the sounds of the many people that don't.

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