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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. Bob


    England (south coast)
    Sure... I'd better make notes as I read then! ;-)

    I added this bit to my last post, after you'd quoted me:

    I'm now personally leaning towards understanding that ME is a specific disease described by the historical definitions, but I believe that this will only be helpful to our community if the knowledge is now expanded upon and developed on a large scale and brought up to date using latest research and more recently diagnosed and evaluated patients. I think the CCC should also be kept and used for the political constructs 'CFS' and 'ME/CFS', as this will be a helpful step in the right direction for our community, at least politically speaking, until historic 'ME' research is developed on a large scale. The current definitions of 'CFS' and 'CFS/ME' have a lot of research behind them.

    It's still all a bit vague at the moment for me... more reading to do...
  2. Mark

    Mark Former CEO

    Sofa, UK
    Great post WillowJ...but I don't think that people with the new disease can claim ME.

    How about ME-2? That seems fairly appropriate...:D

    Highlights that the cause of this argument is the term CFS itself, which always was a misnomer and a slave name. It's as wrong to call what people on the "CFS" side "CFS" as it is to call people with "ME" by this name. That's why people with "CFS" would prefer to have the term "ME" - even though technically, that would be a wrong diagnosis.

    What we needed was a proper term to describe what happened at Lake Tahoe, and all of this argument ultimately goes back to the unscientific science of that event.
  3. Tulip

    Tulip Guest

    Already done :thumbsup: just thought it was helpful in understanding those tensions :D
  4. Bob


    England (south coast)
    Now that is a good idea! Why didn't we think of that before?!? It's so simple! CCC could diagnose ME-2? A perfect solution for everybody? (I'm ever the optimist!)
  5. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    you need to understand that, particularly earlier on the thread, SOC (and myself) had a number of personal accusations (such as being ignorant, not well read) and other such remarks that had, perhaps unintentionally, sounded snobby, directed at her (and at me). while it would be ideal if everyone could respond in a manner that you describe, patience is not something that most people have an infinite store of, and SOC's appears to have been exhausted (although she did maintain patience at first). I think she's taking a break from the thread for this reason. (I had to take one also.)

    on the other hand, my insistence that telling people who fit CCC and who are unsure whether they meet the criteria approved by certain factions, that they cannot use the title ME, is divisive and unkind, and we need to seek the correction for the science problem outside the patient community, was also taken as an insult. No personal offense was intended.
  6. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    This is actually what I've been saying is an option the entire thread. :D
  7. Bob


    England (south coast)
    Oh, sorry Willow, I do seem to miss a lot sometimes, even though i've read everything!
  8. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    no worries! I didn't mean to say you were stealing my thunder.... I just felt sad the point had been ignored until now
  9. Tulip

    Tulip Guest

    Can't remember who said it, but Dr Chia an infectious disease specialist has been doing A LOT of research on enteroviruses and M.E./CFS, which does cover the original definition of M.E.. So research has not stopped..

    Here are the symptoms of an on going enterovirus, which basically describes true M.E.

    Symptoms Commonly Seen for Persistent NonPolio Enteroviral Infections
    Listed here are common symptoms of persistent non-polio enteroviral infection. This list is from observations made by Dr. John Chia in his Infectious Disease Medical Practice in Torrence, CA.

    Respiratory and/or gastrointestinal symptoms or just flu-like symptoms (fevers, body ache, headache etc.). Few virus infections present with both respiratory and GI symptoms.

    Upper respiratory tract symptoms such as runny and stuffy nose, sinus congestion and pain, sore throat, ear pain, difficulty in swallowing, loss of smell or taste.

    Upper and lower gastrointestinal symptoms such as nausea, indigestion, reflux, abdominal bloating, upper and lower abdominal pain, cramps, constipation alternating with diarrhea.

    Sudden weight loss due to significant stomach problem or decreased caloric intake, or weight gain due to inactivity.

    Numbness in the limbs, muscle twitching and spasms. Some experience facial tingling and numbness.

    Many types of headaches.

    Bone, muscle, and/or joint pain. Foot pain is quite common.

    Chest pain, palpitations and tightness

    Cough, shortness of breath, wheezing

    Low blood pressure

    Heart arrhythmia (irregular heartbeat) or tachycardia (rapid heartbeat)

    Intermittent low grade fever, chills and night sweats.

    Reproductive irregularities and pain.

    Prostate issues and pelvic pain.

    Blurred vision.

    Herpangina (blisters or ulcers over the roof of the mouth). Ulcers may form in the mouth, throat and for females the vaginal/cervix area.

    Recurring yeast or bacterial infections due to a weak immune system.

    Adrenal surge or dysfunction. High cortisol levels or low cortisol levels.

    Psychological problems, anxiety, or depression.

    Mental fatigue when trying to concentrate on tasks. Cognitive issues are very common as are short-term memory problems.

    Sleep disturbance.

    Seizures are rare but do occur.

    Vitamin and mineral deficiencies. Many become anemic.

    Swollen Lymph nodes in the neck and in the armpits


    Organs that can be affected by enteroviruses: heart, pancreas, lungs, liver, spleen, colon, ovaries, testicles, epididymis, thyroid, muscles, skin and the central nervous system.

    Enteroviral infections can trigger dormant viruses to reactivate, such as HHV6, Epstein Barr Virus, CMV, and chickenpox all herpes viruses.

    Children can show symptoms, but parents may not recognize them especially if they are intermittent.

    Children can have many of the same adult symptoms a flu-like illness, fever, mouth ulcers, abdominal pain, loss of appetite, a rash, headaches, leg pain and weakness, muscle twitching, reflux, cognitive dysfunction and perhaps heart pain and arrhythmias. A diagnosis of chronic fatigue syndrome/myalgic encephalomyelitis in children is possible after three months of illness.

    An enteroviral infection should be suspected if the same symptoms recur every month.
  10. Boule de feu

    Boule de feu Senior Member

    Ottawa, Canada
    Mark wrote at #134:

    If CFS is in some sense a version of ME with a few of the characteristic symptoms absent, what is going on here? Is CFS some kind of evolution of ME? Are we looking at an evolutionary event?

    My point, exactly. But, nobody picked it up when I mentioned it at #119.
    I did beat you to it.LOL

    Here is what I wrote:
    The symptoms you mentioned above are the ones that are found in very severe cases of ME. Would you agree that Dr. Cheney and Dr. Peterson ME population could have been less severe cases and this is why they haven't included these symptoms in the CCC case definition. Could the CCC be defining the same disease and this is why Dr. Byron respects the authors' opinion?

    (if this would be the case, then CCC would equal ME. But, maybe this idea is too far-fetched?)
  11. Boule de feu

    Boule de feu Senior Member

    Ottawa, Canada

    OMG, Tuliip.

    I have almost everything that is on Dr. Chia's list.

    I think I will frame this list!

    Now, I will proudly say that i have PN-PEI*

    * a persistent non-polio enteroviral infection.
  12. Nielk


    I would like to know if the members of this forum who claim to suffer from true ME as opposed to CFS (which according to you is not a true disease) suffer from EACH an ALL of symptoms of the original historical ME as defined by Dr. Ramsey?
  13. Boule de feu

    Boule de feu Senior Member

    Ottawa, Canada
    Almost all of them.
    But I am a CCC case... so I don't claim to have ME.
    I have ME/CFS.
  14. Tulip

    Tulip Guest

    Boule de feu :victory:

    Of course, that is what M.E. is, as is Dr Chia's list (an almost complete list of M.E.). If you are going by the CDC definition, no CFS is not a disease.

    Somewhere in the late 1990's all this information seems to have been forgotten by general practioners (not specialists), who did once know it and how to diagnose it. I remember having many discussions in the early 1990's with friends that had M.E., we all had those symptoms and were easily diagnosed, we also knew that it was an illness that presented in epidemic form, heaps of us got sick the same year and that it often ran in families. That was all without the internet. It is horrible how the lines have been blurred so much!. If Dr Chia's symptom list is used instead of the skinned cat version "the CCC", then M.E. can easily be diagnosed, along with the correct tests....

    Posted this before but I think it was missed.

    Chronic Fatigue Syndrome (CFS) - also known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME)

    Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a complex and debilitating illness that affects the brain and multiple body systems. Symptoms include widespread muscle and joint pain, cognitive difficulties, chronic, often severe mental and physical exhaustion and other characteristic symptoms in a previously healthy and active person.

    A recent study found VP1, RNA and non-cytopathic viruses in the stomach biopsy specimens of CFS/ME patients with chronic abdominal complaints. A significant subset of CFS/ME patients may have a chronic, disseminated, non-cytolytic form of enteroviral infection, which could be diagnosed by stomach biopsy.

    For more information:
    Chia, JKS, Chia, AY;(2008), "Chronic fatigue syndrome is associated with chronic enteroviral infection of the stomach," Journal of Clinical Pathology 2008;61:43-48.
  15. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    what about the th2 shift?

    say one used to get night sweats, but doesn't get hardly any signs and symptoms of infection anymore (not even when really needing to run a fever), and the night sweats disappeared along with the chronic bronchitis and ability to run a fever?

    what would one have then?
  16. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    The problem still for those in the US is that "ME" does not exist here. The "History of ME" as dating back 60+ years is unknown to virtually all practicioners. No one has ever acknowledged, to my knowledge, that the Tahoe outbreak was likely an outbreak ot ME. There IS NO disease called "ME" according to the CDC, etc.

    So, what is one even supposed to do anyways? If you took this information about enteroviruses and ME or ME/CFS or Chronic Viral Infection CNS Illness (I'm at a loss as to what names to use now!) you would be looked at like you have 2 heads. No one is going to to a stomach biopsy on you, unless you can pehaps go see Dr. Chia.

    I would like a stomach biopsy. I would like to be tested for enteroviruses. How do I do that? I can't travel to see a specialist.

    Other than Dr. Chia, what research has even bee done as of late looking at enteroviruses and ME/Viral CNS Illnesses?

    And what treatment exists?

    I did find this very interesting: "Enteroviral infections can trigger dormant viruses to reactivate, such as HHV6, Epstein Barr Virus, CMV, and chickenpox all herpes viruses."

    Like many others I suffer from persistant herpes infections and did have elevated Coxsackie B4 titiers.

    I have no idea if I have ME, as it has been diagnosed and viewed historically. Like many others I fit the CCC and have definite chronic viral CNS illness. Whatever that qualifies me as having-Ok, then fine. All I want is what everyone else wants, answers and treatment.

    Still to this date it seems like you are a crazy person if you try to explain to a doctor that you have CNS Dysfunction caused by viral infections. To sound like a simp: What is so hard to understand??

    And I just get so sick and tired of more and more research being done that looks promising, may even uncover a huge part of many people's illness, but it either ends there and no further reseach is done, and NO medical treatment is (rarely) ever offered!
    If you do find something you have to travel possibly across the country or world for "novel" treatments that cost a fortune sometimes. WHAT, are HOUSEBOUND people supposed to do? Wait to die? Live in agnoy for 30, 40 years or more?

    How many years, How many years?? Don't we have but this one life??
  17. rlc

    rlc Senior Member

    The differance between the Nightingale and CCC definitions.

    Hi Bob, you posted this. For anyone who is interested, here is the Nightingale Definition of 'ME' written by Byron Hyde:
    Without studying the two definitions very closely, I can't work out the difference between this and the CCC.

    Im going to do my best to explain the differences, because if people can understand this, a lot of people will realise that their misdiagnosed and can then try and get a doctor to properly investigate them and give them their correct diagnosis and treat and possibly cure them.

    Please note everyone, Im not saying that anyone who doesnt have ME is less sick, in a lot of cases they can be a lot sicker and are at grave risk of dying from things like missed cancers, heart defects etc etc

    The key difference between both the Nightingale and the Ramsey definition and the CCC is


    I have read large amounts of the old literature on ME, and the Key finding in all of them is that ME is always! A sudden and acute onset illness! This onset stage often has symptoms like respiratory tracked infection, stomach infection, Vertigo, slightly raised temperatures etc, it is very obvious that the patient has an infection! Ramsey explains the onset in great detail in his definition link The importance of this is, if anyone has a gradual onset illness no matter what symptoms they have, it is impossible for them to have ME, Just as it is impossible for someone with a gradual onset illness to have Dengue fever, meningitis or bubonic plague etc, etc.

    The first step Dr Hyde takes with his patients is to put gradual onset in one group, because they cant have ME and need to be extensively investigated to find out what is really wrong with them. Sudden onset go in another group and then he works out which ones have ME and which ones have other diseases that have a sudden onset.

    There is nothing revolutionary or amazing about this approach its what all doctors are taught at med school, gradual onset diseases dont have a sudden onset so if you have a patient with a sudden onset then start by looking for sudden onset diseases, E.G. is a patient arrives with a sudden onset disease with fever and pains in neck etc, start looking for sudden onset diseases that fit that picture, if you start by looking for a gradual onset disease like cancer you will miss something like meningitis and kill the patient. The CCC makes no mention of this vital fact about ME!!!!! Which allows people with gradual onset diseases to be misdiagnosed as having ME by using the CCC.

    I would like to add that a sudden onset does not confirm a ME diagnosis!!!! There are other sudden onset diseases that need to be ruled out!!! And if a patients illness started with a common sudden onset illness such as EBV or CMV this could be mistaken for the onset of ME but the reality could be that their ongoing problems are being caused by MS, or a Cancer of the central nervous system etc, Medicine is very complicated and nobody should be diagnosing themselves with anything by looking at a set of symptoms!!! Everybody should be being intensively investigated but this isnt happening and is something that needs to be campaigned for, because large numbers of people are suffering needlessly and often dying because of this.

    Dr Hyde clearly explains it thus

    Primary M.E. is an acute onset, biphasic, epidemic or endemic (sporadic) infectious disease process, where there is always a measurable and persistent diffuse vascular injury of the CNS in both the acute and chronic phases. Primary M.E. is associated with immune and other pathologies.

    So he says it has an acute onset, and that it is Biphasic so after the initial phase its symptoms then change into those that become permanent!

    He also clearly states as does all the literature on ME that it happens in Epidemics which means it has to be an infectious disease. The people who wrote the CCC havent done their research and have completely overlooked this vital point as well.

    You will also see that he states that ME is a measurable and diffuse vascular injury of the Central nervous system and that this is measurable.

    In the CCC link it states
    Quantitative EEG, SPECT and PET Scans and Spectography: qEEG analysis of brain waves, SPECT estimation of dynamic brain blood flow and PET analysis of brain metabolism show diagnostic promise and will become more important as these techniques are refined and research confirms their diagnostic value.

    However for some reason they have just left it at that, Dr Hyde however has followed up on this lead and established that that SPECT, PET and QEEG scans can diagnose someone with ME and whats more can tell how severe the damage to the CNS is.

    This is a major difference between the Nightingale and CCC definitions. Dr Hydes definition explains how to 100% accurately diagnose ME whereas the CCC leaves it as a guess!

    Now I can imagine most people will read this and go well thats all fine and well, but how on earth am I ever going to get those scans done to confirm my illness.
    This is something that desperately needs to be campaigned for, Dr Hyde needs to be contacted for more information and it needs to be taken to the media to create pressure for change.

    The reality is that someone with MS has to have a Lumbar puncture and a MRI to confirm diagnosis, MRIs are far more expensive then the scans needed to confirm a ME diagnosis and there is nothing unreasonable or excessive about ME patients having them done!

    If people can understand what ME is, that it has a sudden onset and a defined set of symptoms, then a lot of people will be able to easily see that they dont have it. If they also know that CFS was invented by the CDC and the Wessely School to cover up the existence of ME and there isnt a disease called CFS. Then that only leaves the possibility that they have some other illness and all the other illnesses that cause these symptoms are already known and treatable and often curable.

    Im writing another post that shows that the CDC damn well knew that it was ME at Lake Tahoe and that they invented CFS to cover it up. Have found some very interesting smoking guns which I will be posting soon.

    Because its so important that people realise that the use of the CCC easily leads to misdiagnosis Im going to write this next sentence in capitals and then try to explain why this happens.



    I know that a lot of people have a lot of faith in the CCC, and Im not trying to upset anyone but it is a very flawed document!!! So Im going to try and set out these flaws so that people will be able to see what they are and they could be misdiagnosed.

    I have no doubt that the CCC was written by people who had good intentions However they have not done their research properly and are not great diagnosticians.

    You can tell that they havent done their research properly, by reading the references at the end of the CCC. In the CCC reference they have not named a single publication on ME which is inexcusable, some of this ME literature was published as late as 1990. This literature was and still is available in the medical journals such as the Lancet, even the CDC managed to find it! Some of it is in the CDC references in the Lake Tahoe investigation. The CCC even mentions this CDC publication so they would of seen that these documents existed if theyd read the CDC references.

    What you will find though if you look at the CCC references is that they have relied heavily on the works of the Wessely School!!!! Such as S Wessely, MC Sharpe, I Hickie, AR Lloyd etc. And the work of the CDC ,Fukuda, Holmes, Schonberger, Straus etc these people can best be summed up in two words The Enemy! Who have invented this entire problem!

    The CCC is essential what its name says it is a ME/CFS definition which is a mix of some of the symptoms of ME and some of the symptoms of the diseases that get miss diagnosed as CFS. The reality is it doesnt define ME or any other disease there is no disease called ME/CFS this is as silly and unscientific as saying MS/AIDS.

    One of the Keys to understanding the faults of the CCC is to realise that the idea that Post exertional malaise (PEM) is somehow exclusive to this condition is nothing more than an internet Myth, that has no scientific or medical truth to it whatsoever!! And no valid medical source has ever said that it is exclusive to ME or CFS. In the CCC you will find a large list of diseases that should be excluded, they are supposed to be excluded because they have the symptoms laid out in the CCC including PEM.

    The CCC also doesnt actually say you have to have PEM, it sayss this
    There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen. There is a pathologically slow recovery period. usually 24 hours or longer.

    Obviously there saying you can have post exertional malaise, or post exertional fatigue, or post exertional Pain or a combination of these things. Whichever of these symptoms someone has, there still found in numerous other diseases. So when you look at the symptoms you need to have to qualify for ME/CFS using these criteria, you have to have.

    All four of these first symptoms listed to Qualify

    1 Chronic fatigue: found in 299 conditions.

    2 Post-Exertional Malaise and/or Fatigue and or Pain: found in numerous conditions.

    3 Sleep Dysfunction: found in numerous conditions and hundreds of millions of people who arent sick.

    4 Pain e.g. Myalgia, joint pain, headaches. Again found in numerous conditions.

    If you have all four of the above which just about everybody with any kind of a chronic illness does! From then on you get to pick from a very large smorgasbord of symptoms.

    5. Only 2 of a large number of very different neurological/cognitive manifestations.

    6 and then only one symptom from two of the next three categories, which contain large lists of extremely different symptoms.

    Or to put it another way, with what the CCC says to qualify for a diagnosis of ME/CFS you can have one patient who has

    1 chronic fatigue
    2 Their fatigue gets worse with exertion
    3 They dont sleep well
    4 they get headaches
    5 Confusion and impairment of concentration
    6 Light-headedness, and abnormal appetite.

    Well there are lots of conditions that could cause that, but it is also a very good description of depression, these symptoms are also those of Sleep dysfunction so youve just misdiagnosed people with sleep disorders and these are also symptoms of excessive under eating and over eating so anorexics and the obese could be misdiagnosed as well.

    Then on the other hand you can have a person who has every symptom listed to the extreme, they can be so sick that nobody would be surprised if they died, do these two different people who would both qualify for a ME/CFS diagnosis using the CCC have the same illness? Obviously not!

    Because some of the symptoms of M.E have been added to those attributed to CFS in this Criteria it has about 40 very different symptoms, (if theyd added dermatological symptoms of well they would of succeeded in naming just about every symptom its possible to have with a chronic illness). And you only have to have eight of them!!! The first four, and then only four from the following large lists of symptoms to qualify and none of these symptoms are specific to anyone illness!!

    As anybody who has tried playing Lotto will tell you, trying to get eight out of forty gives you an almost endless permutations of different possibilities, which means using this criteria there is an almost endless array of possible combinations that you come up with and then say that the patient has ME/CFS. Which makes the CCC a very dangerous tool for diagnosis,

    Another major problem with this definition, which proves that it was written by people who are not very good diagnosticians, is this. Although it has a large but incomplete list of diseases to rule out. The tests that it says should be done, will never, ever rule out the diseases that they name which are

    Addisons disease, Cushings Syndrome, hypothyroidism, hyperthyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes mellitus, and cancer. It is also essential to exclude treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological
    disorders such as rheumatoid arthritis, lupus, polymyositis and polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse.

    These tests

    Routine Laboratory Tests: CBC, ESR, Ca, P, Mg, blood glucose, serum electrolytes, TSH, protein electrophoresis screen, CRP, ferritin, creatinine, rheumatoid factor, antinuclear antibody, CPK and liver function, as well as routine urinalysis.

    Do not rule out all of those diseases!!!

    And it also says this

    Clinicians should carefully consider the cost/benefit ratio of any investigative test for each patient, in addition to avoiding unnecessary duplication of tests.

    So it actually tells doctors not to spend money investigate patients properly!

    Since the invention of CFS one of the biggest problems has been the complete absence of good diagnosticians involved. The only two Ive ever heard of are Dr Hyde and Dr Mirza.

    As an example of the very poor level of testing recommended by the CCC in the complexities of Diagnosis written by Dr Hyde in which he explains both how to investigate ME patients and those that are misdiagnosed Files/Byron Hyde - Complexities of Diagnosis.pdf

    He states that he finds at least 25% of missed illnesses doing these tests most of which are blood tests therefore not very expensive

    Most physicians would not find the preceding series of tests all that alarming unless they believe that the ME/CFS group of illnesses is an invented phenomenon. This simple set of tests may lead to other tests that define the disease of at least 25% of the group who are mistakenly diagnosed with ME/CFS.
    Without this baseline, it is pointless to do more expensive tests since the tests already mentioned may
    suggest the illness. Even physicians who agree that this set of tests is reasonable may balk at additional

    1. Routine CBC with sedimentation, blood smear, ferritin, and IBC. Many patients have a
    significant ferritin and IBC anomaly with normal Hb and Ht.
    2. Eosinophil count.
    3. Before ordering B12, check with the patient, who often is consuming vast amounts of B12 in vitamin combinations that will give abnormal highs.
    4. Urinalysis and culture.
    5. Immune and protein electrophoresis.
    6. Immune panel only if it can be done in the immediate vicinity.
    7. TSH, FT3, FT4, and thyroid antibody tests.
    8. Thyroid ultrasound must be done on all patients. In the past two years, I have diagnosed six cases of thyroid malignancy with ultrasound. Often, these patients have normal serum thyroid tests.
    9. Parathyroid Ab, Ca, and Ph.
    10. Complete lipid profile.
    11. HIV 1 and 2, treponema antibodies, hepatitis B (surface and core ab) and C, toxoplasmosis,
    histoplasmosis, Lyme disease.
    12. Tuberculin skin test for all patients who have not received immunization.
    13. Stools for parasites, ova, and blood x 3.
    14. SGOT (AST), SGPT (ALT), bilirubin, BUN, uric acid.
    15. ANA and rheumatoid battery if suggested.
    16. PA and lateral X-ray of chest and X-ray of sella tursica and sinuses.
    17. Fasting and 3-hour glucose and glucose tolerance if indicated.
    18. Smooth and striated muscle ab and mitochondria ab.
    19. Street drug profile to include cannabis, cocaine, LSD, and so on.
    20. Prostate specific antigen (PSA) on all males over 25.

    And another 25% doing these

    The most important tests that I do are Doppler scans and echocardiograms. They are more productive than
    MRls or almost any other group of tests in uncovering pathology in ME/CFS patients. The following
    tests, which I do on all patients, pick up another 25% of the underlying cause of disease:
    Visual carotid Doppler from aortic arch
    Visual transcranial Doppler to include vertebral and basilar arteries
    Thyroid ultrasound
    Echocardiogram and Doppler

    Has anyone here had all those tests done???????????????

    Just as an explanation in this document He uses the term ME for ME

    ME/CFS for the ones that there is doubt whether it is ME or CFS and they need more investigation to find the true diagnosis which he then does He is not stating that there is a disease called ME/CFS.

    And he uses CFS for the gradual onset group who are always misdiagnosed and dont have ME.

    So to sum it all up the Nightingale definition which is written by Dr Hyde who has worked exclusively with ME patients for a quarter of a century, in Canada and all over the world, who has read all the published and literature pre 1988, and has personally gone and examined patients from all but one of over sixty of the known ME epidemics.

    1 Correctly explains that ME always has a sudden and acute onset.

    2 That it is biphasic, the onset is then followed by different symptoms in the second phase and this then can become a chronic permanent condition.

    3 That it is an infectious illness that can occur in epidemics.

    4 That it has an incubation period of 4 to 7 days

    5 That ME is a persistent diffuse vascular injury of the CNS in both the acute and chronic phases.

    6 Explains how it can be correctly diagnosed using the likes of SPECT, PET and QEEG scans. And tests needed to measure cardiac function etc.

    7 Correctly explains the symptoms of ME

    The CCC however despite the good intentions of its authors

    1 Is a poorly researched document that has no mention of the over 50 years of extensive research into ME that had been done in the USA and UK and instead relies heavily on the work of the Wessely school and CDC.

    2 Fails to make any mention of MEs acute onset, thereby allowing people with a gradual onset disease to be misdiagnosed with it.

    3 Fails to mention the Biphasic nature of ME that helps to distinguish it from other illnesses.

    4 Fails to recognize that ME is always a diffuse vascular injury of the CHS in both acute and chronic phases.

    5 Fails to recognize that it has been recorded since 1934 that it occurs in epidemics and there for has to be highly infectious.

    6 Fails to mention that ME has a known incubation period of 4 to 7 days and that this has been known since the earliest epidemics, and instead rambles on about EBV, CMV HHV6 etc which are immediately ruled out as causes of ME, because their incubation periods are to long E.G. EBV has an incubation period of 40 days.

    7 Doesnt show that ME can be diagnosed by SPECT, PET and QEEG scans, and instead leaves no way of getting a guarantee of a correct diagnosis.

    8 Doesnt correctly list the symptoms of ME and instead mixes up the symptoms of ME with those from the diseases misdiagnosed as CFS, and effectively creates a new disease ME/CFS that doesnt exist!

    9 Lays out the symptoms in such a fashion that the four main qualifying criteria are those found in just about every chronic disease. And then lets people select only a handful of other symptoms from a vast list of very different symptoms that are found in a vast number of different diseases.

    10 Has a list of tests that doesnt even come close to ruling out their large but very incomplete list of diseases to be excluded. And has instructions for doctors not to do more for financial reasons.

    There are other faults in it, but basically they have failed to do their research and because of this had no idea of what ME is and always has been, and have created a diseases that doesnt exist, and guaranteed that lots of people will be misdiagnosed using this document. And that people selected for research using this criteria are going to be a large collection of misdiagnosed people with only a slight chance of someone with ME being in the research and ending up with more of the endlessly confusing results that come from this research that helps no one!

    All the best!
  18. insearchof

    insearchof Senior Member

    Hi RlC

    I was in the process of making a similar post on the distinctions between the Nightingale and CCC documents as a follow up to my last post to Bob, and as a result of a valid point raised by Mark.

    Your post went beyond this. So thank you for such a generous and significant contribution.
  19. insearchof

    insearchof Senior Member

    Hi TheMoonIsBlue

    I hear your frustrations and understand them. You want what we are fighting for: treatment and research into ME as acknowledged by historical ME literature and due recognition of it as an existing and distinct and measurable medical disease.


    ME clearly fell off the physicans radar sometime in the 1990s.

    One of Tuliips posts attests to this occuring in Australia at a time that appears to have coincided with the drafting (which took a few years) of the current Fukuda based CFS Royal Australasian College of Physicians (RACP) Guidelines on CFS that were completed around 2001.

    That questionable document, made the factually false statement that CFS was once referred to as ME.

    So my guess is, that this was peddled on mass to the medical profession here. Those knowledgeable on ME here, would have seen that statement for what it was - blatantly false. However those doctors may well now be retired. I am sepculating, but I would imagine that the doctors who understood ME well/the best, were the older doctors who remembered Polio.

    The next generation of doctors had little knowledge on Polio - because after vaccinations, in most developed nations, it was relegated to the realms of an historical illness not seen post 1978 in the wild and deemed absent from the population.

    So there was no real need to really consider it, let alone go looking for non paralytic enteroviral infections and forms of the illness in the context of modern medical practice.

    Consequently even if this generation of doctors had some knowledge on ME, they would not have readily made the connection with it to polio and the need for doing immediate blood tests for enteroviral infections probably would not have readily embraced it as older doctors who had knowledge on both, might have. They would have seen ME as an a medical oddity (ie they believe there is no evidence of brain or spinal inflammation - only because historical material has been lost to them) and perhaps, in light of such, a questionable illness.

    The generation after this one of course, may never have heard of ME and consequently, they would have happily accepted the lie told in the Australia RACP Fukuda CFS document.


    I do not discount that the Lake Tahoe outbreak was ME. However, the facts seem to suggest that there was nothing on the public record to attest to this fact and known by Parish and Shelekov-the two ME experts who were part of the pannel of experts called to contribute to a definition of the illness.

    That aside, the CDC are well aware of and know and understand what ME is. As RLC may have already pointed out - they are believed to have one of the best medical science libraries on the planet.

    Recently the CDC website was updated. However, prior to that, they acknowledged ME and pointed out that it was not CFS. I was fortunate enough to have refound that statement that was once clearly evident on their web site but is no longer:


    See: [URL="[/URL]

    Rlc post provides the tests you require. I agree though, at this juncture it is very difficult to get a doctor to take the subject seriously enough to undertake the investigations. Hope is found in a doctor who is open minded and is willing to learn and work with you. This though, can take some time - especially when housebound and unable to atttend medical clinics regularly.

    Regarding being tested for enteroviruses, if you can get to Dr Chia that would be ideal. I do not know whether he recognises the Nightingale document for diagnosis purposes, but I do know that he makes a clear distinction between what he regards as his ME patients (enteroviral infected) and those he refers to as his CFS patients. The significance of Dr Chia, is as you say, for a stomach biopsy. If you cannot get there, but at some stage are required to under go an endoscopy due to associated GI problems - then you can provide your gastro interologists with instructions to take tissue - following Dr Chias instructions on where to take the tissue and how to prepare and send it - and have the GI specialist send it to Dr Chia's labs for testing. However, it is invasive -and as RLC states there are other less invasive and expensive tests. But you might like to simply keep that in mind, should you ever need an endoscopy.

    Was this cited from one of Dr Chia's papers, (which I have read but might need to revisit) as I would be interested on reading more on this subject. It is something I have looked at in the past and so, would like to learn more.

    No, not if I can do something about it. I might not be able to do a lot - but I will do what I can and I would encourage you and anyone else who feels as you do, to do the same.
  20. Boule de feu

    Boule de feu Senior Member

    Ottawa, Canada

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