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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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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. taniaaust1

    taniaaust1

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    Im sure there are maybe a few in the US who have got an ME diagnoses (thou its very rare) as the CDC (I know this was still up last year but dont know if it still is now thou as I know they've changed their site since I was there), clearly stated on their website on the CFS part that ME and CFS werent the same thing and were different illnesses (They had 2-3 different references to this on different places of their CDC stuff). They didnt then go on anywhere and describe what ME was and they didnt have an area for it at their site which explained their own ME comments further.

    So I even emailed CDC about it and they responded giving me specific places to contact to get answers to my questions on "what are the differences between ME and CFS which they refer to on their site?"... to which I followed throu with their email suggestions but it was a wild goose chase as none of those refered places could answer, so I further emailed CDC and at that point they were going to phone me over it and asked me what time they could phone.. (I wanted to arrange others to sit in on the CDC call with the questions on ME and CFS but then went throu a crash at that time and didnt contact them back to give them a time to arrange a discussion with me.. it all got to much).

    Im sure not having the ME defination on the CDC site would of stopped many doctors who looked it up on the site from giving ME diagnoses but Im sure a few out there would of remembered ME from a long time back (before CFS got brought in) and could of still diagnosed someone with ME since the CDC site WAS recognising that ME existed and was different then CFS and was saying that publically for all to see at the time (that info I know had been there for at least 3 years as that was when I'd first come across it and these aknowledgements of theirs).
     
  2. taniaaust1

    taniaaust1

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    Sorry but you are very wrong there. As far as Im aware (someone please correct me if Im wrong).. the Candian Consensus CFS defination was put together by some very knowledgable people.... some (maybe most or all) knew this illness causes epidemics as they had dealt with ME patients from epidemics.

    I believe the ones who put together this defination (the consensus party or whatever you want to call it were specialists of ME/CFS) were Bruce Carruthers, Anil Jain, Kenny De Meirleir, Daniel Peterson, Nancy Klimas, Lerner, Alison Bested, Pierre Flor-Henry, Pradip Joshi, Peter Powles, Jeffrey Sherkey, Marorie vande Sande.

    Many of those above who put this doctument together are extremely well known.. some of the top ME/CFS people in the world and hence certainly do know that this illness is also in epidemics. Daniel Peterson actually was one of the two famous ME/CFS specialists (with the other being Dr Cheney) in big ME Incline Village outbreak at Lake Tahoe treating those from that outbreak....
    Check out this http://en.wikipedia.org/wiki/Daniel_Peterson_(physician) .. (others on the CCC doc panel also have equal experience with this illness).

    I have no answers why they left out the epidemic info in the CC CFS doc (maybe it was recognised that not all causes can be linked to epidemics???? and they wanted it so it fit all cases of ME??? ) but one certainly cant say this group, didnt know about epidemics or did not know about ME.
     
  3. taniaaust1

    taniaaust1

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    http://c4jrme.110mb.com/supplement223.htm Here's a good description of a ME outbreak in 1970s by the guy who investigated it. Im amazed at this description as it describes how my symptoms at been (probably the most accurate description of found of what Ive experienced from the "flu storm" onset, to the hypersomina where I slept for long periods.. days at a time, i wouldnt wake.. to the things like hands not holding onto things and legs giving way etc etc).
     
  4. insearchof

    insearchof Senior Member

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    Tania,

    That information is still there - but they have rearranged their website - so it is now hidden from view. It just goes from bad to worse :(

    I agree with you, that it would help enormously, to have material explaining what ME is on their website, for no other reason than to give doctors a heads up - that such an illness actually exists and it is distinct from CFS.
     
  5. insearchof

    insearchof Senior Member

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    Hi Tania

    Having read the article Tania, although there are similarities between what the author personally calls IVN, there are marked differences, which suggest (despite his claims) that IVN is not ME and would more aptly be described as PVFS with evidence of CNS dysfunction as classified at G93.3

    We have been discussing Ramsay on historic ME and the distinctions he made between ME and PVFS earlier in this thread and the example here would seem to fit there.

    Historic ME literature speaks strongly about an enteroviral association.

    The historic ME literature, the Enteroviral Foundation of USA and other research report that enteroviral infections present as a short term (3-7 days on average) gastro intestinal or respiratory illness, not a flu illness of the nature characterised by IVN.

    IVN is according to the authors characterisation in that article, a flu storm that can last from weeks to over a year. Clearly the infectivity periods are very substantially different, suggesting completely different illnesses.

    The author suggests that IVN occurs in epidemics.

    I would have liked to have researched this point further but I was unsuccessful and couldnt find any information on IVN doing a pub med search, a general google or wikipedia search. (Thought that is not to say it is not there. Perhaps someone else might have better luck?)

    A search at wrong diagnosis.com, did not return anything on IVN specifically, but did make reference to leucocytoclastic venulitis . Whether this is related I am uncertain, but it appears to be a vascular syndrome associated with a hypersensitive reaction triggered by a drug, other substance or an infectious agent. Nothing more is mentioned.

    The author did suggest that a literature search he conducted in the 1970s on EPIDEMIC PHLEBODYNIA (EP), '(meaning painful veins), made reference to 3 reported epidemics. However, he distinguished his patients illness from EP, on the basis that his patients presented with more symptoms.

    So I had trouble finding anything on IVN and or epidemics associated with it.

    All the same, the author states that the epidemics associated with IVN report spontaneous bruising and painfully swollen veins. I imagine though that these are symptoms you would commonly expect in a vascular condition and may be the key characteristic of that illness. However, they are not features I recall reading about in the historic ME literature as that body of work related to epidemic or sporadic cases. Again, I would say that this feature of what the author calls IVN would distinguish it from ME as reported in the historical medical literature.

    The author goes on to suggest that IVN epidemic cases were often milder. Again, I think this is at odds with ME in historical epidemics, where this was not the general picture given.

    Strangely he says that those who had the bruises and painful veins might have presented at the onset of the illness and therefore might go unnoticed. Personally, I would have thought that most people who experience vascular associated pain and or sudden bruising, generally, would not fail to notice such, unless they are in the light coma state he also reports with IVN. Again, I dont believe the heavy sleep/coma state is generally observed with ME. Though there have been reports of drowsiness if I am not wrong.

    For all these reasons, I do not believe the author can successfully claim that IVN is the same as ME.

    Personally, I do not find this article a good summary on ME at all at. It might be on IVN, but I know little about that, so cannot comment.

    I believe that for someone coming to this thread, who is trying to understand the distinctions we are trying to make between ME and CFS, might find that article quite confusing.

    For a start, the author refers to ME epidemics as CFS.

    This is historically inaccurate. CFS was devised by the CDC in 1988 and has a distinctive case definition. Historical ME, as discussed in this thread and reported in the literature, dates back to 1934 and has its own distinctive characteristics and definition. The CDC also recognises the distinction between the two illnesses.

    The author also claims that ME, CFS and the illness that he refers to as IVN are all the same. As I have tried to point out, I do not believe this is correct.

    Even though the author believes that IVN, CFS and ME are the same he then states:

    If CFS was changed, how can it thereafter remain the same as ME and or IVN and therefore, how can they all be the same?

    The author then states:

    I think that is fair comment. He personally believes that IVN (that might be similar in some respects but is vastly different to ME in many others), is the same disease. However, for the reasons expressed, I do not agree.

    However, some what confusingly, having stated that he believes them to be the same, he then goes on to mention how they are not!

    So even though he makes the argument that IVN, CFS and ME are the same, the vascular features which appear to be one of the distinctive features of IVN (particularly the vascular pain and bruising I would have thought) are not mentioned in CFS and are simiply alluded to, in ME.

    So this is very contradictory, confusing and directly at odds with his main premise, that IVN, CFS and ME are all one and the same.

    He then states:

    Whilst ME has historically been associated with enteroviral outbreaks such as polio, CFS has not. CFS was created in 1988. As stated previously in this thread it has a distinctive case definition from ME as defined in historic literature. Further, the CDC recognizes that ME and CFS are distinct illnesses. The WHO recognizes such as well. ME has a distinct classification at G93.3 and CFS does not, it is noted only in the index ICD 10 AM.

    So to sum up why I think this article should be avoided on the topic of ME:

    a. the author claims all the conditions are the same, but on the basis of matters discussed in this thread, I would have to say I strongly disagree.

    b. the author uses terms in a confusing, interchangeable manner and is sometimes contrary on the points he is trying to make to establish that all these illnesses are the same.

    The author states that a literature search on EPIDEMIC PHLEBODYNIA (EP),( meaning painful veins ) is not the illness he has termed IVN in his patients - because they presented with many more symptoms. He then stated that the findings of his literature search on ME suggested IVN was similar to ME. Whilst, it might be that they do share some similarities, they are by no means the same and therefore IVN cannot be said to be ME on my analysis and understanding.

    At best, I believe IVN would represent a PVFS with evidence of CNS dysfunction as classified at G93.3 ICD 10AM
     
  6. insearchof

    insearchof Senior Member

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    Hi Tania,

    This jumped out at me and I have been puzzling over it too:

    I would say that at the time that the CCC was drafted you are correct - that this group did know about ME. Cheney especially, would have known that the Lake Tahoe outbreak was ME. It has been stated elsewhere that Byron Hyde diagnosed those patients as such.

    It seems that this fact was not acknowledged(as we all well know) in the original CDC definition.

    I would guess that Hyde diagnosed the Lake Tahoe cohort with ME after that definition came into operation post 1988. Rlc has posted material recently, which makes the case strongly, that the CDC knew at that time, of the first CFS definition in 1988 -what ME was and had indeed considered ME and dismissed it.

    So you raise a good question.

    Why did people like Cheney who was involved in the first injustice, fail to see to it that ME was fully acknowledged in the CCC definition?

    Was it possible that he too recognised that CCC was an attempt to codify all existing research literature as it related to CFS and not ME -for the purposes of assisting a CFS clinician?

    If so, he and others, who might have similarly recognised the same distinction that the CDC maintains -between ME and CFS, would not have needed to incorporated the historic ME literature into that document - as it was primarily concerned with drawing together all the research findings on CFS to assist a physician make a CFS diagnosis.

    Thats just off the top of my head - at an hour far too late for thought.
     
  7. Bob

    Bob

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    In a 2007 paper, John Chia found enterovirus VP1 protein in 82% of what he calls 'CFS' patients, who were diagnosed using the CDC criteria, and in 20% of the controls... 82% seems like a very large number to me, especially considering he was using the CDC CFS criteria. I'm not certain if he does further selection of the patients or not... He seems to recognise that ME has an acute onset (see my next post)... I'll look out for info on this.

    Unfortunately you can't make a diagnosis based on the enteroviruses alone though, because 20% of the healthy controls tested positive.


    Chronic fatigue syndrome is associated with chronic enterovirus infection of the stomach
    John K S Chia, Andrew Y Chia

    http://www.enterovirusfoundation.org/pdfs/research/CFS-is-associated-with-CEI-of-stomach.pdf


    Results: 135/165 (82%) biopsies stained positive for VP1 within parietal cells, whereas 7/34 (20%) of the
    controls stained positive (p(0.001).


    Conclusion: Enterovirus VP1, RNA and non-cytopathic viruses were detected in the stomach biopsy
    specimens of CFS patients with chronic abdominal complaints. A significant subset of CFS patients may have
    a chronic, disseminated, non-cytolytic form of enteroviral infection, which could be diagnosed by stomach
    biopsy.


    Methods: 165 consecutive patients with CFS underwent upper GI endoscopies and antrum biopsies.

    A total of 165 consecutive patients, fulfilling the CDC criteria
    for CFS,1 underwent upper GI endoscopies and antrum
    biopsies. No one was excluded from the analysis.


    Results:
    A total of 135/165 (82%) biopsy specimens stained positive for VP1 within parietal cells, whereas 7/34 (20%) of the
    controls stained positive (p(0.001, x2 test).


    Discussion:
    CFS can be triggered by a number of treatable infections, and
    our previous work showed that 50% of the first 200 CFS
    patients had raised neutralising antibody titres for 10 of the top
    20 enteroviruses isolated in the USA from 1970 to 2005.33


    Finding enterovirus VP1 protein in 82% of stomach
    biopsy samples seems to correlate with the high percentage of
    CFS patients with GI complaints.
     
  8. Bob

    Bob

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    Here is some very interesting info about 'acute onset' and how an acute onset can easily be missed by patients who can wrongly assume that they have a slow onset condition.

    So if a patient thinks that they have slow onset CFS, then this is meaningless...
    Their acute onset may have been overlooked and not thought of as significant.


    Hummingbird website on acute onset:

    http://www.hfme.org/methemedicalfacts.htm

    M.E. is always an acute onset illness, however it should be noted that: (a) some sufferers will be unsure of their onset type (they may not recall it, or may not recall it accurately, for various reasons) and (b) in some cases, acute onset M.E. is preceded by a series of unrelated minor infectious episodes (in a previously well patient) which may be misinterpreted as being a gradual onset of the M.E. (These minor infectious episodes may be due to the immune system being under temporary or chronic stress from events such as; recent immunisation, repetitive contact with a large number of infectious persons, or the effect of travel; as in exposure to a new subset of virulent infections. This pre-existing temporary or chronic immune system weakness is not seen in all patients and is not what causes M.E., although a compromised immune system will of course make the body more vulnerable to all types of infections, including M.E.)




    John Chia on acute onset:

    http://www.phoenix-cfs.org/old_site/IntChia2.html

    I do not pick the patients who came to see me. About 20% or more of the patients have so called gradual onset of CFS without a clear-cut flu-like illness. It is important to look for prior episodes of fatigue following a flu-like illness. Several patients became debilitated without an obvious preceding flu, but already had a prior episode of fatigue that lasted a few weeks to a few months years earlier. Many of them had frequent respiratory infection in the previous year, or IBS or functional dyspepsia for years before developing more fatigue.

    Many of them had frequent respiratory infection in the previous year, or IBS or functional dyspepsia for years before developing more fatigue.

    The case I presented at the symposium illustrated this principle. The patient developed a respiratory infection in November but did not have abdominal pain and onset of fatigue until May of the next year. After the colonoscopy performed in August, the patient developed a severe flare of the viral infection, including fevers, myalgia, profound fatigue, abdominal pain, vomiting, and leukopenia, requiring hospitalization. She had 100,000 copies of viral RNA in the 40 micron section of the terminal ileum biopsy obtained one week earlier. It is not an accident that the flare happened after the colonoscopy and biopsy. The infection has been active but at different sites. One would swallow the infected respiratory secretions into the GI tract, but the initial GI symptoms will not manifest since the patient is still fighting the viruses in the respiratory tract.

    Later on, which can be months down the line, after the immune response subsided, the viruses in the GI tract will start to grow. These are not necessarily two different infections. One patient had clearly documented viral myocarditis following severe bronchitis in December, but did not develop CFS until June the next year without another infection. We have seen a number of patients who could have respiratory symptoms for one week, to follow by severe GI symptoms; the latter often were attributed to the side-effects of antibiotics. However, the same cycles would occur even without taking the antibiotics. Months later, the patient would develop ME/CFS.

    Furthermore, a number of patients would tell me the CFS started in March or April but could not even remember that they had recurrent bronchitis in the previous October through December. The GI symptoms could only be 1-2 days when the patients were traveling, which they thought were self-limited food poisoning. The interval between the initial infection and the onset of ME/CFS can be variable, so the absence of a flu-like illness has to be scrutinized by very thorough questioning.
     
  9. Bob

    Bob

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    Some info about recovery:

    Dr Melvin Ramsay:
    The degree of physical incapacity varies greatly, but the [level of severity] is directly related to the length of time the patient persists in physical effort after its onset; those patients who are given a period of enforced rest from the onset have the best prognosis. Since the limitations which the disease imposes vary considerably from case to case, the responsibility for determining these rests upon the patient. Once these are ascertained the patient is advised to fashion a pattern of living that comes well within them (1986).

    Hummingbrid website:
    M.E. can be progressive, degenerative (change of tissue to a lower or less functioning form, as in heart failure), chronic, or relapsing and remitting. Some patients experience spontaneous remissions albeit most often at a greatly reduced level of functioning compared to pre-illness and such patients remain susceptible to relapses for the remainder of their lives M.E. is a life-long disability where relapse is always possible. Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and sometimes M.E. is fatal.

    Dr Peterson:
    'When asked on CNN how many of his M.E. patients had fully recovered in fifteen years, Dr Peterson equivocally and chillingly stated, "None." (Munson 2000, p. 5).
     
  10. Bob

    Bob

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    Byron Hyde says on his website, that people who have been given a 'CFS' diagnosis might have 'ME', but if they don't actually have 'ME', then they have been misdiagnosed with 'CFS', meaning that if you don't have ME then you have some other health condition (not CFS) that your doctor has not investigated properly and hasn't been able to diagnose. (I've paraphrased him.)

    Would that be a fair summary, in a nutshell, of what a number of people have been saying on this thread?
     
  11. Bob

    Bob

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    To read about some subjective experiences of people diagnosed with 'ME' on the Hummingbird website, see here:

    http://www.hfme.org/whatmefeelslike.htm

    (There's a lot of text, and I found it quite depressing, so please only tackle this if feeling strong enough!)
     
  12. Bob

    Bob

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    Here's a paper by Ramsay studying the Royal Free outbreak, and other cases...
    I've just posted this because the Royal Free outbreak is so famous, and so I thought it might be interesting for people to read...
    It includes some interesting information about: outbreaks and sporadic cases; symptoms of the patients; and patterns of illness including recovery, remitting/relapsing, and no recovery.

    'Epidemic neuromyasthenia' 1955-1978
    A. MELVIN RAMSAY M.A., M.D.
    Infectious Diseases Department, Royal Free Hospital, London

    Summary:
    A record of fifty-three patients admitted to the Infectious
    Diseases Department of the Royal Free
    Hospital between April 1955 and September 1957
    suffering from 'epidemic neuromyasthenia' establishes
    the fact that the condition was endemic in the general
    population before, during and after the outbreak
    among the staff of the hospital. A further outbreak
    occurred in North Finchley between 1964 and 1967
    and sporadic new cases are still being encountered.
    The majority of these patients show evidence of involvement
    of the central and sympathetic nervous
    systems and the reticulo-endothelial system. Abnormal
    muscular fatigability is the dominant clinical feature
    and it is suggested that mitochondrial damage may
    provide an explanation for this phenomenon. Enzyme
    tests carried out in seven cases show pathologically
    high levels of lactic dehydrogenase, and glutamic
    oxalo-acetic transaminase. A follow-up study suggests
    that there is one group of patients that recovers completely
    or nearly completely, a second that recovers
    but is subject to relapses and a third that shows little
    or no recovery, these patients remaining incapacitated.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425324/pdf/postmedj00263-0015.pdf
     
  13. Bob

    Bob

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    Thanks tania. That's interesting.

    To rlc and insearchof... I'm catching up with the thread... So I haven't read all of your recent posts yet.
     
  14. Cort

    Cort Phoenix Rising Founder

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    I think its a very worthwhile discussion and my guess is that these groups will be weeded out eventually. If you're talking about advocacy, though, I think that discussion only gets in the way of the main discussion; ie there are a million sick people in the US - getting piddly funding - and its been that way for 25 years.

    I must say this is a fascinating finding

    I imagine that Dr. Bell might agree.....The Dubbo and Taylor studies seem to show different rates of recovery. Some people with infectious onset do 'recover' (get much, much better) in the first couple of years.

    Its astonishing there have been so few studies on disease course in CFS.
     
  15. Bob

    Bob

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  16. Bob

    Bob

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    But also note that some researchers are of the opinion that most, or all, ME patients don't ever completely 100% recover.


    Yes, it's a crime that there hasn't been a heck of a lot more research in all areas of ME.
     
  17. insearchof

    insearchof Senior Member

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  18. insearchof

    insearchof Senior Member

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    Personally, I would say that is a good summation of the pov on this thread.
     
  19. insearchof

    insearchof Senior Member

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    Good advice. Its akin to reading the CFS memorial board -not to be approached unless in a very positive and strong state of mind. :(
     
  20. Tulip

    Tulip Guest

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    I didn't realise he had a treatment plan?. Would be great to hear how it goes if you do decide to do it, thanks!.
     

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