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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

    Hi Tuliip dont know if youve seen this before, its an article where Professor Hooper and colleagues that explain the difference between ME and CFS. It contains a lot of medical information on ME plus the history of ME and the history of CFS. It may be a bit long for the people youre writing to, to read but if you put it as a link it might get them interested.

    Link here http://www.investinme.org/Article-020 What is ME What is CFS.htm
  2. rlc

    rlc Senior Member

    Hi All, my feeling is that people not knowing the difference between ME and CFS especially the medical community, is probably the single biggest problem facing people with ME and those with CFS. For people with ME it has meant that since 1988 when the CDC invented CFS and said that it was ME all research into ME has stopped, except that done by a few individuals like Hyde and Dowsett, before this it had been extensively researched and was well understood, if research could be resumed based solely on patients who had ME with the large advances in modern medicine since 1988 its quite likely that causes and possible cures could be found.

    I feel that although the ME and CFS people have been stuck in the same boat by the likes of the CDC and Wessely School and should stick together to help each other. The CFS group needs to realise that there are not the same illnesses, ME is a disease of the central nervous system, CFS is a fatigue syndrome. And the last thing the CFS group needs is people with ME in any studies done on people with CFS because this can only lead to seriously skewed results which will help no one, If you look at all the studies into CFS since 1988 they all have very contradictory results, the reason is that there being done on people with different diseases which is why no ones able to work out whats going on!

    Personally I think one of the biggest tragedies for the CFS group is the belief that CFS is a disease, its not its a syndrome, that can be caused by numerous conditions, and the belief that it is a disease causes both people with it and doctors not to continue looking for the underlying cause. Even a group of doctors from the notoriously useless NHS managed to find that 40% of patients diagnosed with CFS had been misdiagnosed and often have treatable illnesses link http://www.rcpe.ac.uk/journal/issue/journal_40_4/newton.pdf 40% of the estimated 20 million people with CFS means that about 8 million people are suffering needlessly and in a lot of cases dying because fatal diseases are missed.

    Dr Byron Hyde finds that only 25% of the thousands of patients hes seen have ME, of the other 75% he is able to find whats really wrong with them (missed major diseases!) about 80% of the time and a lot of them can be successfully treated and believes that his failure to find the cause in the rest is because of his own limitations as a diagnostician not because there is some mystery disease in this group. He explains his methods in detail here http://www.wicfs-me.org/Pdf Files/Byron Hyde - Complexities of Diagnosis.pdf It is also worth bearing in mind that the majority of his patients are Canadian and it is the Canadian consensus criteria that is being used to misdiagnose these patients

    A lot of these problems occur for CFS patients for two reasons one there doctors are useless and dont do extensive testing to find out whats wrong with them and two because sources like the internet etc are full of blatantly false information. A good starting point for understanding the real history of ME and CFS is this article by Dr Hyde http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf It is also helpful to read the CFS diagnostic criteria in the order that they were written starting from the first, with a bit of additional information. Ill do my best to try an explain it.

    During the 1980s the numbers of people getting sick with M.E began to increases dramatically, including the famous outbreak of M.E at Incline village, Nevada known as the Lake Tahoe outbreak. Where doctors Drs Paul Cheney and Daniel Peterson were swamped by a large number of patients who had a sudden onset and acute disease that had all the symptoms of WHO defined M.E which it unmistakably was! It had the incubation period of 4 to 7 days, this was easy to work out because the epidemic was traced back to a girls high school basketball team, who were travelling around the area on a bus to play other teams and wherever they went people rapidly became sick.

    Incubation periods are worked out by tracking down the first person in an epidemic to become sick and then working backwards and finding the people who they had come in contact with, who had become sick and working out how long it had taken from contact with the first person to get sick, for the other people to get sick and so on. In all outbreaks of ME it has been between 4 to 7 days

    In 1987 things start to get very strange to say the least! Enter the US CDC, Centers for Disease Control, during this year a certain Dr Gary Holmes who was the next year to write the first Chronic Fatigue Syndrome criteria and to invent the new illness CFS, went and had a look at the situation at Lake Tahoe, because some people had bafflingly come to the conclusion that it may be an outbreak of Epstein Barr virus (EBV) he then tested the people there for it and came up with results that showed it wasnt http://www.ncbi.nlm.nih.gov/pubmed/3033337. Two of the other doctors involved in this study were J.A Stewart and L.B Schonberger who became co writers in the next year of the Holmes criteria.

    What makes the idea that this outbreak of M.E could have been caused by EBV so blatantly ridiculous as Dr Hyde points out is that the incubation period was known 4 to 7 days, EBV was known at the time and had been for a very long time to have a incubation period of 40 days, so it was impossible for it to be the cause! EBV is spread through saliva even if this girls basketball team had kissed everyone they came in contact with there would have been a 40 day delay in people getting sick, there wasnt there was a 4 to 7 day delay between contact and people getting sick! What turns you from the thought that this group of CDC doctors must have been a bit thick! Into having the thought that something deeply suspicious is going on is when you realise that the CDC has one of the best medical libraries in the world with all the information on the incubation period of EBV in it! And the incubation period of EBV was common knowledge throughout the worlds medical community!

    So next we come to the invention of Chronic fatigue syndrome in the first diagnostic criteria for CFS the Holmes definition http://www.ncf-net.org/patents/pdf/Holmes_Definition.pdf written by the same Dr Gary Holmes who turned a blind eye to the whole issue of incubation periods for EBV, co written with the help of 15 other CDC doctors who also ignore the issue of incubation periods! Including J.A Stewart and L.B Schonberger. In this piece of stunningly unscientific nonsense! based on them studying the Lake Tahoe epidemic, they decided to rename WHO defined M.E, Chronic Fatigue Syndrome and say that it was caused by any one of these five viruses chronic, Epstein Barr (EBV), chronic, Cytomegalovirus (CMV) Chronic, Herpes Type 1, Chronic, Herpes Type 2 and Chronic, Measles and said to qualify for a diagnosis of chronic fatigue syndrome you had to have failed tests for any one of these five different diseases, a deeply suspicious conclusion when you consider that none of these five diseases have symptoms anywhere near those of M.E and all of them have incubation periods that are far too long and immediately rule them out as possibilities! It is also completely unscientific to group together five separate viral disease and give them all the same name, especially when the viruses have been identified and everything about them known!

    So what the Holmes definition did was group WHO defined M.E with EBV, CMV, Herpes Type 1, Herpes Type 2 and measles and say they were all the same thing, (Six separate illnesses with one name???)And give them all the completely un- medical and demeaning name Chronic fatigue syndrome. In this Criteria they ignored all the published information on M.E which would have been in the CDC library, which showed that it had always been since 1934 a sudden and acute onset disease and instead didnt distinguish between sudden and gradual onset and just said that it had to be fatigue lasting more than six months. Replaced most of the known symptoms of WHO defined M.E which had been established by hundreds of Doctors over the previous 54 years, with symptoms that are basically those of chronic EBV such as palpable lymph nodes, a low grade fever and fatigue and invented the worlds first ever disease of exclusion, meaning that all other diseases that could causes these symptoms had to be ruled out. The only good thing about this criteria is that it has a reasonably large, though incomplete list of diseases that need to be ruled out.

    This Criteria was then used by the CDC to abolish all the known facts of WHO defined M.E and to say that M.E was CFS and had the symptoms mentioned in Holmes criteria. If this Piece of unscientific rubbish hadnt been written then Chronic Fatigue Syndrome would not exist! It is interesting to note that two doctors involved in the writing of the Holmes criteria refused to sign their names on it, and withdrew from the CDC definitional committee because it came nowhere near close to defining M.E or what had happened at Lake Tahoe!

    The next step! The plot thickens; enter the psychiatrists! In this equally unscientific piece of garbage written by Professor Simon Wessely written in 1991 http://www.kcl.ac.uk/content/1/c6/01/47/68/PDF19.pdf he expresses his view of the situation, that all the recorded outbreaks of WHO defined M.E can be explained by implying that their outbreaks mass hysteria! Although the CDC had just said in the Holmes criteria that EBV was one of the causes of CFS, He states The professional reaction to the realisation that EBV was not the causative organism was to change the label. In 1988 the term chronic fatigue syndrome (CFS) was introduced in the USA and Australia Which is an absolute lie! The 1988 CDC Holmes criteria clearly states that EBV is one of the causes! He then states that CFS is basically a psychiatric illness and that CFS is the same illness as ME and uses the term CFS/ME so therefore there both psychiatric illnesses! And theyre both the same thing!

    Next we come to the Oxford criteria for CFS also written in 1991 found here http://www.theoneclickgroup.co.uk/documents/PACE/CFS Oxford Criteria 1991.pdf

    The principle author is the psychiatrist Dr MC Sharpe who is a member of the Wessely School (the doctors who follow the beliefs of Professor Simon Wessely) and 38% of the Doctors who wrote this were Psychiatrists or Psychologists! In this yet again unscientific waste of ink! You will find that the physical signs mentioned in the Holmes criteria e.g. palpable lymph nodes and low grade fevers have gone! And been replaced with no clinical signs! So no failed tests as well. The lists of diseases to be excluded have gone! And we now have two illnesses listed under the umbrella of chronic fatigue syndrome. 1 post infectious fatigue syndrome that has now become a subtype of Chronic fatigue syndrome, with no mention of what kind of infection it could be, and no recommendation that you have to fail any specific test to qualify for this diagnosis, and 2 Chronic fatigue syndrome an illness with no clinical signs and the principle symptom is fatigue. Now they have established that chronic fatigue syndrome is a psychiatric illness, because as anyone who knows anything about science will tell you, you cant have effect without cause, so if there are no clinical signs it can only be a psychiatric illness! This all gets incredibly disturbing when you realise that members of both the Wessely school and members of the CDC involved with creating Chronic fatigue syndrome are working for insurance companies and other groups that are making billions of dollars out of this because if the disease is seen as psychological the insurance companies dont have to pay the suffers of it! Detailed information on this here please read http://www.hfme.org/whobenefitsfromcfs.htm In short Chronic Fatigue Syndrome is not a disease it is a vast money making scam!

    By the time we get to the 1994 CDC Fukuda criteria http://www.cdc.gov/cfs/general/case_definition/complete.html all pretence of post infectious fatigue syndrome has been dropped, and it is a disease in which you dont fail any tests so therefore the only possible logical conclusion is that it is a psychiatric illness! It is again a document written largely by members of the Wessely School such as Dr MC Sharp. Interestingly despite the fact that the Fukuda criteria was claimed to be written by CFS experts Dr Fukuda is not an expert in CFS he is an expert in Leprosy! And a lot of the other doctors involved were psychiatrists. Personaly I can see no logical reason why the CDC would choose to put an expert in leprosy with virtually no experience with ME or CFS in Charge of writing a Criteria for CFS!

    All the following CFS criteria follow the same pattern; you fail no tests so logically it can only be viewed by the medical profession psychiatric illness! The exception to this is the Canadian consensus criteria, which was written by people who didnt know that CFS and M.E are totally different things hence the name of it ME/CFS, a review of this can be found here http://www.hfme.org/canadianreview.htm#62990082 because the CCC which is mainly a CFS definition also has some of the features of ME in it, it can very easily lead to misdiagnosis as an example of this it includes POTS as a symptom, POTS is a symptom of ME and both doctors and patients tend to see this as confirmation that they have ME/CFS, POTS is a symptom of numerous conditions most of which cause the symptoms found in the CCC and all of them need to be medically tested for and ruled out before anyone leaps to the conclusion that having POTS means you have ME/CFS, the diseases that cause POTS can be found here http://www.dinet.org/what_causes_pots.htm

    The only criteria that are actually about WHO defined M.E and are written by people who are experts in it are

    The Ramsey definition http://www.mecfsforums.com/wiki/Ramsay_definition

    And the Nightingale definition http://sacfs.asn.au/download/NightingalesDefinitionofME.pdf

    People need to realise that not only is it that Simon Wessley is the first person to invent the term CFS /ME, but also when CFS was first invented in the Holmes definition it wasnt a mystery illness it was said to be caused by chronic EBV, CMV, Herpes type one and two and Measles that could all be tested for and where known to cause these kinds of symptoms. The only Mystery is why anyone in their right minds would give five different chronic viral conditions the same name, and then say that ME is the same thing.

    It is the Psychiatrists of the Wessely School that actually invented CFS as a mysterious illness with no clinical signs or failed test results, which means it can only logically be seen as a psychiatric condition. It is these same Psychiatrists that have invented the symptoms that are attributed to it, and it is this same group of psychiatrists that have been constantly pushing the line that CFS patients dont need extensive medical testing because nothing will be found and it is this that is leading to so many people being misdiagnosed.

    Personally I believe that the information being kept top secret by the UK government in the file held at the medical research council, will be about the hiding of the facts about ME behind the smokescreen of the artificially created disease CFS info about this here http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.pdf

    Its easy to understand how in the past both the majority of Doctors and patients were unaware of all of this, but with the advent of the internet all this information is on line, people just need to take the time to read it in the right order, the people involved have left a very large paper trail, which they would of thought that nobody would ever see, there a large amount of the investigations into ME pre 1988 on line which clearly show its a different disease, the changing nature of CFS through the various definitions can be followed, the involvement of the Wessely school is easy to see, and there are endless articles by them that clearly show their views and the workings of their minds! Their involvement in insurance companies and government agencies that stand to gain from all of this is now on line. You can see that a large number of the people involved in the writing of the definitions had virtually no interest in ME or CFS before or after writing these definitions. You can easily type the names of diseases that are mentioned as ones to be excluded in the criteria into Google and youll soon see that the tests that are needed to rule them out are not included in the testing requirements in the criteria etc, unfortunately the majority of patients are too sick to do this and the majority of doctors who diagnose people with CFS arent interested in finding out, they seem more than happy to have a waste paper basket diagnosis to put all the cases they cant be bothered to work out, or havent got the skills to work out.

    I often see a lot of debate about which criteria should be used to diagnose CFS, but the reality is that no diseases should be diagnosed by using a criteria. All a criteria does is put you in a ball park where a certain disease may be a possibility and then all the other diseases that present in a similar way need to be tested for before any kind of diagnosis is reached, All of the diagnostic criteria for CFS have symptoms that are so common to so many diseases that all qualifying for a diagnosis of CFS using these criteria does is put you in a ball park where you may have any one of over a hundred chronic conditions, it really is a waste paper basket diagnosis! Invented largely by the Wessely School, and despite some of these criteria giving large though uncomplete lists of disease to rule out, in all of them including the CCC the list of basic testing being recommended is never going to come close to ruling out all the diseases on these incomplete lists.

    Personally I think that the single most important thing that the CFS community should be demanding is for the implementation of extensive lists of testing that every doctor has to do on a patient before anyone can get this diagnosis and because a lot of doctors are so out of date and often dont know what the failed tests really mean or even what some of the diseases that get misdiagnosed as CFS are (I have had a Doctor ask me what Addisons diseases is!!) Whats really needed is for a group of very good diagnostic doctors to be got together to write a manual on all the diseases that cause these symptoms and all the testing that needs to be used to diagnose these illnesses, and then this manual needs to be given to every doctor in the world to use.

    Some of the diseases that misdiagnosed as CFS can be found here http://www.hfme.org/misdiagnosis.htm

    Some of the diseases that get misdiagnosed as CFS can also be found here

    Some of the more common and therefore a good place to start for people looking for a correct diagnosis can be found in these articles they explain how common fatigue causing illnesses are frequently not looked for by doctors and how even if they are, they are often missed because laboratories around the world are still using reference ranges that have been scientifically proven wrong.

    As an example he is saying that the reference range for TSH (thyroid) 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 to 28 million extra Americans would be diagnosed with hypothyroidism and that these people are not getting the medication they should and often being misdiagnosed as CFS and or depression. Info on this here http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm

    These problems and how to test for them are explained by Dr Shirwan A Mirza in these articles found by scrolling down these pages 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 A Judicious Evaluation of unexplained symptoms found here http://www.bmj.com/content/336/7653/1124.extract/reply#bmj_el_195696 He explains the problems with current TSH ranges and treatment in the article Unveiling the mysteries of the thyroid here http://www.bmj.com/content/337/bmj.a801.extract/reply#bmj_el_200193 and gives more details on Celiac disease in the article Celiac the great imitator here http://www.bmj.com/content/338/bmj.a3058.short/reply and vitamin D here http://www.bmj.com/content/336/7657/1318.extract/reply#bmj_el_198052

    As proof of what Im saying that a large number of people with chronic fatigue syndrom are misdiagnosed I have in the space of a couple of hours compiled this list of different tests that people on this forum have failed, it is by no means a complete lists because of the number of post here, but it more than proves what Im saying, because it is impossible for anyone disease to cause this number of failed tests.

    The tests that are failed with M.E are actually very few! This is what has allowed people to try and say it is a psychiatric illness, and most of those that are failed are not blood tests but are tests like SPECT scans and Romberg tests, information here http://www.hfme.org/metests.htm

    All known diseases follow a certain pattern of tests that they fail and the number of tests that each disease causes a person to fail are not large! As an example of this primary adrenal insufficiency which causes more failed tests then a lot of diseases, causes you to have, high ACTH, high DHEA, high DHEAs, low Cortisol, low Aldosterone, high Renin, low Sodium and high Potassium, if a person has something like high Cortisol, or low Potassium then you would immediately know they have different disease.

    Heres the list of failed tests

    1. Serum Iron, low and high
    2. Interleukin 8, high
    3. Insulin, high
    4. WBC, low
    5. RBC, high
    6. MCV, low
    7. MCHC, low
    8. Ferritin , low and high
    9. Serum Sodium, low
    10. Urine Potassium, high
    11. Urine lead, high
    12. Urine mercury, high
    13. Haemoglobin, low and high
    14. Homocysteine, low
    15. Aldoseterone, low
    16. Serum potassium, low
    17. Urea, low
    18. Triglycerides, low
    19. Lymphocytes, low
    20. Eosinophils, high
    21. Neutrophils, low
    22. ESR, low and high
    23. MPV, high
    24. Albumin, high
    25. LDH, high
    26. ANA ,positive
    27. Celiac, positive
    28. Lumbar puncture, Oligodonal banding
    29. Hematocrite, high
    30. Ceruloplasmin, low
    31. Serum copper, low
    32. 24 hour urine copper, high
    33. Anion gap, low
    34. Vitamin D, low and high
    35. Vitamin A, low
    36. Vitamin E, low
    37. Aluminium, high
    38. ACTH stimulation test, low
    39. Anti thyroglobulin, high
    40. Cholesterol, high and low
    41. IGAs, high
    42. CBC, low
    43. Serum cortisol, high and low
    44. Urine cortisol, low
    45. Glucose, low
    46. 24 hour urine adrenaline, high and low
    47. DHEA, high and low
    48. DHEAs, low
    49. TSH, high and low
    50. AST, high
    51. ALT, high
    52. ALP, high
    53. Bilirubin, high
    54. Estradiol, low
    55. Free Testosterone, high and low
    56. Total testosterone, high
    57. Estrogen, low
    58. C-reactive protein, high
    59. PTH, high
    60. B12, high and low
    61. Total cholesterol/ HDL, high,

    For those of you who can see after reading all this that there is a very high chance that your misdiagnosed and would like to find the correct diagnosis I would recommend reading this http://www.hfme.org/wheretoaftermisdiagnosis.htm and then do everything to find a doctor who is willing to do what it takes to find out whats really wrong with you. If you can find a doctor who is willing to do the tests recommended by Dr Hyde in the above article the Complexities of Diagnosis and the additional tests explained by Dr Mirza in the articles above you stand a good chance of getting a correct diagnosis which may be treatable or even curable.

    I hope writing all this out helps someone some where

    All the best everyone
  3. Tulip

    Tulip Guest

    Thanks rlc, I think I have already nailed it in my article :) I hope!
  4. WillowJ

    WillowJ Senior Member

    WA, USA
    CFS really isn't a syndrome, either. A syndrome is an entire group of signs and symptoms that tend to run together. So what a syndrome does is it collects one disease or one closely-related set of diseases, prior to having laboratory and imaging diagnostics agreed upon and pathology well-understood.

    A single symptom (Oxford) or a single symptom plus some vague optional symptoms (Fukuda with no modifications) which could go with hundreds of different diseases and have no element which is required that's distinctive... is NOT a syndrome. It's just a hodge-podge. It's useless.

    Debateably, Canadian criteria or Fukuda with PEM required could be considered a syndrome. But one could also argue that pathology and diagnostic markers are (and have always been) available and that really shouldn't a syndrome.
  5. Tulip

    Tulip Guest

    That's why I think it's best described as a waste basket term and that it was the CDC's revoltingly corrupt attempt to kill off a real disease (ME) by renaming it CFS.
  6. rlc

    rlc Senior Member

    Hi Tuliip, just like to say its great to see someone trying to promote the truth that ME and CFS are not the same thing, instead of the usual misinformation that is promoted, I hope your letter is well received and makes a difference to this situation Thank you!

    Hi Willowj of course your right CFS isnt a syndrome, it just called one, in reality all it is, is a whooping big lie invented by the CDC and the Wessely School and the biggest medical scandal since thalidomide, which has lead to all investigations into causes and possible cures for ME being stopped, and millions of people being diagnosed with CFS or ME/CFS when the reality is that they have known diseases which are often curable or at least treatable, and in a lot of cases people are being left to die from things like missed cancers and heart problems.

    A situation that makes me both very angry and sad at the same time. So to lighten my mood and hopefully some other peoples who are reading this Id like to propose some possibilities for name changes for CFS.

    CDCIALS= CDC invents a Lie syndrome
    HWGRS= How Wessely got rich syndrome
    DDS= Dumb Doctor Syndrome
    CFSSICMS= Chronic fatigue syndrome saves insurance companies money syndrome
    HDGOODWS= How Doctors get out of doing work syndrome
    MDAMWTWANS= MY doctors a misogynist who thinks women are neurotic syndrome (I think this is one of the main reasons women get diagnosed with CFS more than men.)
    MGSMBNTMS= My Government saves money by not testing me syndrome
    IMDHPMAAMSIWHTSDS= If my doctor had paid more attention at med school I wouldnt have this stupid diagnosis syndrome
    TLSBDS= Treated like shit by doctors syndrome
    TOTSHS= Thrown on the scrap heap syndrome
    And of course
    WBDS= Waste basket diagnosis syndrome

    If anyone reading this thinks that there should be names like ME/CFS please read this http://www.hfme.org/problemswithnamechange.htm

    All the Best
  7. Tulip

    Tulip Guest

    Thanks rlc :D
  8. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    I'm more confused than ever after reading the Hummingbirds website. What has me really confused, although I've know this for a long time, is that:

    "M.E. is a neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system not a problem of chronic fatigue. Fatigue is not a defining (or even essential) symptom of M.E. M.E. and CFS are not at all the same thing"

    From the cases of severe ME I've seen in the UK, the women completely bedbound, incapacitated, unable to move or barely speak- this seems like a total different illness- "true" ME as defined and viewed since long ago.

    Also, they say "M.E., there are a specific series of tests which enable a M.E. diagnosis to be easily confirmed (MRI and SPECT scans of the brain for example)" ....." punctate lesions in M.E. brains resembling those of multiple sclerosis patients"

    Do all ME patients have these abnormal lesions on their brains?

    All in all I do see what great harm could be done to ME patients by combining ME/CFS, (although I admit to using that term constantly instead of CFS because CFS is so revoulting and degrading, in many situations maybe CFIDS would be bette) because like I said, these severely afflicted patients with severe neuromuscular impairments leaving them virtually unable to move, speak, sometimes swallow, let alone bathe themselves, do not deserve to be anywhere near the revoulting name "Chronic FATIGUE syndrome", when they have a disease that has been documented for decades. I don't know why the ICD code, if I am correct, ever combined ME-CFS? Or why, in the UK, CFS ever started to be used in place (sometimes) of ME?

    Plus once again, if FATIGUE is not even essential in ME, then once again, my head is spinning and I don't know where we are at.

    I don't want to harm any ME patients and I don't want to say I have CFS, when I am way, way beyond any CDC definition and in fact fit the CCC to a "T". But I have never had an MRI or SPECT Scan.
  9. insearchof

    insearchof Senior Member

    Hi The MoonisBlue

    I understand your confusion.

    The key to understanding that statement is the word ''defining''.

    That statement is saying - that when medicine distinguishes between illnesses and categorises them - they do so by identifying certain key features as being attributed to that illness. Now that is not to say that other features or symptoms are not present - just that, for the purposes of defining and distinguishing the illness from other like illnesses, some symptoms are selected as key features of the illness.

    The key feature of ME is damage to and dysfunction of the Central Nervous System. This is the key feature selected by the medical profession to distinguish it from CFS, for example - in which the key feature in the medical definitions is unremitting fatigue.

    Ramasay et al have stated, that all cases of ME have damage to the CNS. So if there is no evidence of damage to the CNS, then it is unlikely to be ME.

    Damage to the CNS can be detected using a variety of the tools, as listed at HFME and elsewhere in the literature.

    Lesions are very clear and unambiguous examples of damage to the CNS.

    Hypoperfusion by PET or SPECT is another example.

    Poor performance indicators or unusually low IQ post illness - on psychometric testing is another indicator, but is not as reliable as the other two.

    Do all ME patients show lesions in their brains? I suspect if SPECT and MRI are taken within the first 12 months of illness the answer would be yes or at the very least, hypoperfusion would be indicated on a SPECT. Hyde has stated the lesions on MRIs generally show up in the sickests or most severely affected. This may be why he also prefers SPECTs showing hypoperfusion....in the event that lesions are not visible on an MRI.

    The point is though - there must be some evidence of damage to the CNS. Without it - it cannot be regarded as ME.

    The ICD Code ICD 10 AM (in Australia and UK) does not give a combined code for ME and CFS.

    ME and Post Viral Fatigue Syndrome have a classification at G93.3 Chp 6 under diseases of the Central Nervous System.

    CFS has no classification, but it is mentioned in the ICD, but only in the index. It does not have its own classification.

    If you look at RLC comment in this thread, you might find the answer to the second part of your question there.

    So to conclude, HFME statement is one reflecting current medicines approach to the classification of illness and disease.

    The statement is correct because ''Fatigue'' is not a symptom of ME, something much more severe and life threatening is: CNS and ANS dysfunction that renderes a patient unable to retain a steady homeostatsis essential to maintain energy necessary for life. That is much more than fatigue, or chronic fatigue. However, once again - it stems directly from a serious injury to the CNS and ANS. So even though it is very severe, it is secondary, if you follow.

    That is why from a medical classification perspective, HFME states it is not essential ...in that it is not the key defining criteria that distinguishes it from other illnesses.

    In saying that, though I do not believe the intent of the HFME statement is to suggest or imply, that such a loss of life energy of the ilk you described and attributed to the bedridden etc, is not important or troublesome. It is indeed.

    Hope that makes sense.

    In any event, that is how I read that statement, on the basis of my general reading on the subject matter.
  10. WillowJ

    WillowJ Senior Member

    WA, USA
    The other way to look at this is that the case definition of CFS was invented to describe the neuro-immune condition of ME (which was, of course, already listed as a neurological condition with WHO); the patients in question had low NK cell function and some/all had MRI lesions. However, the CFS case definition was pretty much a failure at describing ME. Plus, it used a stupid and confusing name, and it was unnecessary to rename the condition in any case.

    This bad situation was made worse when the UK (and later the CDC with the Reeves inclusion) made the title of CFS to cover not only ME plus some more sloppy inclusion of other conditions (Holmes, Fukuda), but also now to deliberately cover most/all Chronic Fatigue ("Empiric"/Oxford).

    The artificial construct of CFS, then, contains the patients the name CFS was coined for--the ME patients with PEM, cognitive disturbance, low NK cell function, and abnormal oxidative stress--plus a bunch of misdiagnosed patients with real conditions that deserve attention, but that are unrelated and are best treated and studied by considering those patients to not have CFS/ME but seek various alternate diagnoses. (If it turns out that a small percentage do not have other named diagnoses, they still need to be studied separately, divided into as discrete divisions as possible.)

    And there is no such thing as CFS, other than a misnomer for ME and a misdiagnosis for unfortunate people with "CF" (which is not an actual condition, but just a conglomerate of patients not diagnosed or properly investigated because their doctors are too busy, not well trained, or have some sort of an intellectual bias about CF/CFS).

    This view is explained at http://www.cfids-cab.org/MESA/index.html and probably represents the views of a greater number of researchers in the field, as well as patients, than the hfme position does.

    It should be noted that most medical dictionaries define fatigue as an entirely subjective sensation which is not related to physical capacity to perform work, in contrast to weakness, which is related to physical capacity to perform work (engineering definition of work here--including basic walking, lifting a cup, and other minor motions... as well as, of course, laying sod, carrying groceries, and all the normal things we'd think of as work).

    By that definition, fatigue is not a significant part of our disease, because whatever we have does affect our physical capacity. Doctors can design tests to measure this--and they have done so, the few that have cared to. So we have weakness, and you can feel unconfused about that bit now. :cool:
  11. WillowJ

    WillowJ Senior Member

    WA, USA
    either way, I wouldn't worry about harming anyone by using ME or ME/CFS instead of CFS if you don't know whether you have CNS damage (most of us would not have had assessments, or at least not thorough assessments, for that).
  12. insearchof

    insearchof Senior Member

    Hi Willow


    Ok, I am going to play devils advocate here, as I am a stickler for facts and I have always had trouble with this assertion that the case definition of CFS was ''invented to describe,,,,,ME''

    I have always been interested to find some probative evidence on this very point, because it strikes me, if we can find it - it would be very important and significant.

    What can you provide in support of this Willow (or anyone else) ----that the case definition was invented to describe ME?
  13. insearchof

    insearchof Senior Member

    Unfortunately,it is not correct to say that CFS is a misnomer for ME and I would suggest to you, despite your reassurances to themoonisblue, that persons with an ME diagnosis (especially those who had one prior to the introduction of CFS) would find this offensive.

    Historic medical literature on ME states, that there is always CNS dysfunction. Not all persons with a diagnosis of CFS, will have CNS dysfunction and will not have ME.

    So CFS is not simply a misnomer for ME.

    In fact CFS as defined, is nothing like ME as defined in historical medical literature.
  14. Tulip

    Tulip Guest

    Agree, insearchof

    CFS really describes what the CDC "thought" was at the time an outbreak of mono/glandular fever, because they were a bit thick and didn't listen to the doctors on the ground at the incline village outbreak (cheney), who were saying no to that theory and the CDC ignored MRI scans of those patients that showed AIDS like lesions. The outbreak was in fact M.E.. CFS in fact describes post viral syndrome, which is why it resolves itself. It should not be confused with M.E and people should not call CFS, M.E.!.

    There is a really good video from the 1980's on youtube that describes the outbreak well - Dr cheney is on it.
  15. insearchof

    insearchof Senior Member


    Thanks Tulip. I may have seen that video, but it might be good to revisit it.

    Heres are a couple of questions that maybe someone can answer:

    *did Cheney and or Peterson put their views in writing and lodge them with the CDC or to any other offical government body, prior to the formulation of the CFS definition - challenging the CDCs mono like illness theory?

    * If yes -did Cheney and or Peterson state that in their view, this was an outbreak of ME?

    As I cannot recall such. What I seem to recall was that they did not think it was a mono like illness, (obvioulsy you dont get sudden onset with mono, lesions and CNS dysfunction) but, I dont think they knew what it was.

    I cannot recall them ever suggesting (prior to or at the time of the formulation of the CFS definition) that what they were dealing with was ME. But they could very well have and I have just simply missed this important piece of information.

    Does anyone know?
  16. markmc20001

    markmc20001 Guest

    Standing ovation!!! :Sign Good Job:

    This may qualify for the best post of all time contest.

    Very informative.

    Being a scientist and having t unwind this kind of confusion is ridiculous. The way the science has been botched like this are all felonies as far as I'm concerned. Wonder how many other illness have been screwed the same way. Tax payers paid for this "science" too boot.
  17. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Quote "CFS in fact describes post viral syndrome, which is why it resolves itself." It should not be confused with M.E and people should not call CFS, M.E.!."

    What about people who are "Post viral" onset, but their illness never resolves itself? Then go on to develope unremitting exhaustion, muscle pains, sleep dysfunction, neuroendocrine dysfunction, etc? For example, what the Dubbo studies found?

    Do they have ME? Do they have CFS? Do they have neither?

    Should the Post-viral/infectious onset people who never get well be catagorized with a new name? Or maybe many of these people do have definite CNS damage?.....
  18. insearchof

    insearchof Senior Member

    Hi Moonisblue

    You raise some very good questions.

    This mess is hard to navigate through and I have puzzled over PVFS.

    I have to say that I do not believe that PVFS is synonymous for CFS and I will explain why.

    CFS is a classified as a syndrome - cause(s) are unknown. The key criteria for classification purposes is unremitting fatigue, due to unknown causes.

    PVFS is also a syndrome, but its onset is associated with symptom onset after a viral triggering illness. Its kind of curious to me as to why they even bother calling it a syndrome, as the cause seems pretty evident - the initial viral assualt.

    However, PVFS like ME, but unlike CFS, has an ICD classification at G93.3 under chapter 6 diseases of the central nervous system.

    This recognises that this illness they call PVFS causes dysfunction or disease of the CNS.

    This seems correct with what we know about some viral illnesses which are responsible for causing encephalytis or meningitis for example. But not all viruses do result in disease or dysfunction the central nervous system.

    Consequently, those that do not and do not cause CNS damage, would not be classified as PVFS but as CFS.

    In addition to evidence of damage or dysfunction to the CNS, PVFS patients would not exhibit the same symptoms recognised in ME patients. Further the viral trigger would probably be one other than that traditionally associated with ME - enteroviral infection. These factors would lead to a diagnosis of PVFS as opposed to ME or CFS.

    So on these points alone, PVFS cannot be the same as CFS - because CNS dysfunction is not recognised as a key criteria of CFS.

    Further the ICDs in their classifications appear to make distinctions between them (and CFS does not even score a classification under chapter 6 = diseases of the nervous system)

    So if you had a viral onset with evidence of CNS dysfunction and symptoms that were not quite consistent with ME, you would be diagnosed as having PVFS as classified under ICD 10 G93.3, not CFS.

    If you had viral onset with no evidence of CNS dysfunction and or symptoms consistent with ME, then you would receive a diagnosis of CFS.

    This is my understanding of the distinctions between ME PVFS and CFS.

    There is also some medical literature around the days when CFS was emerging that would also give credence to the distinctions I draw.

    As for the Dubbo class - I am not familiar with their symptoms or cause of their viral trigger, but I dont think it was associated with an enterovirus, which is the traditionally acknowledged trigger of ME. However, if there is evidence of viral onset with damage to the CNS I would say they are PVFS candidates under ICD 10, not ME or CFS candidates. In the absence of damage to the CNS or CNS dysfunction, the dubbo class would be a subset of CFS.

    This is how I have understood the operation of and the distinctions between ME CFS and PVFS.

    So when Tulip says that "PVF'' patients are really CFS, I guess she would be correct, if you use the term PVF to mean patients that do not have PVFS. (ie viral onset, but no evidence of CNS damage or dysfunction and therefore not regarded as PVFS under ICD 10 G93.3)
  19. SOC

    SOC Back to work (easy, part-time work)

    Okay, these distinctions are finally starting to make sense to me. Whether we all agree with the distinctions is another can of worms for another discussion. :innocent1:

    The first thing I had to clarify for myself was that ME as defined by the ME Society of America is not the ME described by HFME and their followers. The only apparent difference is that HFME seems to feel that the cause must be an enteroviral infection, while MESA (following the CCC document) allows for other possible infections.

    At least I think that's true based on the following:

    MESA: (my bolding below)

    ISO: (again, my bolding below)
    note: PVFS = post viral fatigue syndrome

    (ISO's bolding)
    Hummingbirds' Foundation for ME (my bolding below)
    I still have not sorted out what the "symptoms not consistent with ME" are, but I guess they are related to enteroviral infection, since otherwise the symptoms listed are consistent with the CCC document.

    So an ME patient has an enteroviral infection according to HMFE followers. If you have nearly the same symptoms, but they are not the result of enteroviral infection, then you don't have ME, you have PVFS (as I understand it).

    MESA's ME definition, on the other hand, seems to describe the same symptoms but does not insist that they are the result of an enteroviral infection, but instead accepts some infection(s) not specifically identified. It also appears that MESA accepts the CCC for ME/CFS as criteria to define ME, while HFME does not.

    So, other than the identification of enteroviruses as the cause, the CCC doc and HFME symptom summary seem to be describing the same illness:
    http://www.cfids-cab.org/MESA/me_overview.pdf (pgs 2-3 in particular)

    The classes for the use of laymen, then, is:
    enterovirus-associated ME (ref: HFME)
    ME/CFS (ref: CCC doc) -- some prefer to use ME only, but document uses ME/CFS
    CFS -- meets Fukuda + PEM/PER, but not CCC

    The "+ PEM/PER" bit may be contentious. Does anyone think CFS without PEM/PER exists (other than in the minds of Reeves and co, of course ;))?

    So would I bother about distinguishing between ME and CFS? Well, I'd emphasize the PEM/PER and combination of neurological and immune symptoms that don't exist in some of the CDC's criteria and make the distinction between chronic fatigue (the symptom) and ME/CFS the serious illness.
  20. WillowJ

    WillowJ Senior Member

    WA, USA
    Because a number of physicians have said so. For example:
    "Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. Though CFS is based upon a typical M.E. epidemic, in my opinion it has always been a confused and distorted view of reality." - Dr. Byron Hyde

    Also Ramsay said one of the important features of ME was failure to recover from exercise:

    Ramsay, on infections:

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