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Article: Defining Moments: the Myalgic Encephalomyelitis Definitions Over Time Pt I: From Symptoms T

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 24, 2011.

  1. Firestormm

    Firestormm Guest

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    Cornwall England
    Thank you for the link. I have read it before but again I am unable to find the CDC distinct definition for Myalgic Encephalomyelitis:

    'ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS'

    I am fairly familiar with the history - and Cort's article which began this debate is as good an overview of the criteria development as any. When it comes to defining Myalgic Encephalomyelitis - well that's a whole different ballgame. If it were easy and resulted in a test or distinct diagnosis we would not be in the umbrella situation we are in now - would we?

    Well documented outbreaks of the disease still failed in my view to retain the name, to prove the name was most appropriate, and failed to prevent the absorption of Encephalomyelitis into CFS or Encephalopathy (the latter's use has arguably more going for it).

    When I was diagnosed with Myalgic Encephalomyelitis it was along the lines of that laid out by Dr Ramsay (the only real thing around at the time), yet it involved no tests that I recall other than those which happen presently. I do not doubt that for others testing for specific neurological abnormalities occur - whether they are 'better' at justifying the name I do not know - but for my doctors and consultants it was enough that I satisfied the criteria of the time.

    And those criteria - without scans but based on exclusionary blood tests and a viral case history - led to the diagnosis. Which then became 'CFS' when I saw a US physician and Encephalopathy more recently. I personally have been reassessed on average every one-two years for the last decade in several countries, though mainly in the UK, whenever a relapse occurs brought on by a 'viral infection'. The name applied changes but the criteria rarely do to any significant extent and neither do the tests.

    Perhaps you could show me how the CDC test for Myalgic Encephalomyelitis and define it because I would honestly like to know. I would also like to know prevalence data for 'ME' in the US. Here in the UK ME in 1999 was put at 0.3-0.5% of the population which then amounted to 240,000 patients. The paper submitted at the time looked at the history of 'ME' from 1919-1999: of course it could have been wrong...but...

    That is correct - Myalgic Encephalomyelitis - and the figure as well as the condition was enough for it to be a neurological condition as featured in the National Service Framework for Long Term Neurological Conditions 2005-2010. The same prevalence is used today for CFS/ME of course though the figure has risen (due to population and a lack of an update I suspect) to 250,000 in the UK.

    Interestingly enough, and to muddy the already muddied waters even further, the publication featuring these prevalence data, was produced along with the Association of British Neurologists and Surgeons: http://www.neural.org.uk/store/assets/files/20/original/NeuroNumbers.pdf So now we have CFS/ME and it is still a feature of the NSF and thereby a neurological condition. Just one example of course.

    To be in breach of anything, you first have to prove that these criteria are sufficient to separate and distinguish a one group of patients from the more general 'pot' of 'CFS' - if that is what you are suggesting 'CFS' really is. I do not think this is possible at the moment - I hope it is - but I have yet to read any research that absolutely proves some patients have something that others do not, and that the name Myalgic Encephalomyelitis as well as its' position in the WHO - is more justifiable for them, than for the rest.

    As I have said. These 'new' criteria need to be put up against existing criteria and then the resulting cohorts studied to justify the neurological myalgic encephalomyelitis from the (whatever it is you think is different about the remaining) chronic fatigue syndrome.

    What do you reckon? 10% 20% Just using these criteria alone? How many patients would be left in the CFS 'pot'? 0.01%? I mean how do you distinguish them - with PENE - and how do you test for that? How is it neurologically caused by inflammation? Isn't it more likely to be muscular? I don't know. Does anyone? Are we really talking

    Encephalomyelitis here or does the name need to be dropped? How much of this is to do with the dislike for Chronic Fatigue Syndrome? Because believe me - as a layman - when the name was changed in the UK I was pissed. Who the heck wants that for a name?! I mean 'syndrome' covers so much doesn't it?

     
  2. Ember

    Ember Senior Member

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    You point out that the US is the world medical power and everyone else follows their lead, if they start actively researching and promoting the existence of ME then everyone else will follow.

    Would you have any suggestions for Advocacy-Made-Easy-And-Cheap: The Boxes Rebellion? http://forums.phoenixrising.me/show...-need-a-little-help-and-we-can-make-an-impact.
     
  3. rlc

    rlc Senior Member

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    HI Firestormm,
    RE I am British by the way. I don't buy into this being the Wessely influence - far from it. I actually believe it to be the influence of the Royal College of Physicians and probably the Association of British Neurologists, but also General Practitioners who saw the main common symptom as unexplained fatigue.

    They simply never accepted that the patients being presented (and let's face it 'we' are part of a MASSIVE cohort now) had what they believed was 'Myalgic Encephalomyelitis'. And this could be for several reasons, but I personally think the main one being that no research had been able to prove (still hasn't to any degree of satisfaction) that patients were showing demonstrable inflammation of the brain and/or spinal cord.

    Granted there is an argument to say that the two MEs (Encephalomyelitis and the more general Encephalopathy) were added to appease patients and their representative organisations - but the distinctions were blurred long before that happened. Even when 'Myalgic Encephalomyelitis' was the only thing in existence - as when I was originally diagnosed - there was general concern that what it meant was not what had been proved.

    Your greatly underestimating the influence of the Wessely School, in the UK it has nothing to do with medical evidence and scientific facts it is all about Money, lies, deceit and politics!!! I recommend reading these articles by Proffessor Hooper that explains what has really been going on!!!!
    http://www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

    http://www.meactionuk.org.uk/magical-medicine.pdf

    Re you cant scan everyone in the pot,

    You can, they do it with MS!!! Its more a case of wont, not cant! And SPECT scans are a lot cheaper than the MRIs needed to diagnose MS.

    RE You need to be able to demonstrate through quality research that the name justifies the condition being presented, and I do not believe that the ICC is sufficient to do that.

    As it stands at the moment the ICC is not sufficient to do that, it is a starting point that can be used to identify a group that has a far higher chance of having ME ,that can then be used for further quality research, The ICC is planning to soon release a lot more information such as a guide for doctors and on assessing symptoms. Which will hopefully clear up a lot of issues.

    People need to be acutely aware that as it stands at the moment having the symptoms in the ICC does not guarantee that you have ME, it means that there is a high chance you do. There are a lot of other diseases that have the same or similar symptoms that need to be ruled out before an ME diagnosis can be confirmed, Hopefully the list of disease to be ruled out will be coming in the next lot of information from the ICC, then people can be tested for the other diseases and if they dont have them the ME diagnosis can be confirmed because there is no other option.

    The confusion in research has been caused by people mixing up the CFS and ME groups and testing them as if they all had the same disease, which is one of the things that the ICC is hoping to address. But all the research that has been done by people who know the difference has always shown that ME patients do fail specific tests that proves it is a separate disease. E.G ME patients show a unique pattern of damage on SPECT scans, as one of the writers of the ICC is Dr Mena a pioneer in discovering this pattern in ME patients, I hope that a large scale study will be done soon on patients diagnosed by the ICC to prove this once and for all, Hyde also has a work on SPECT scans being prepared for publication.

    RE Here's a question if I may. What percentage of those now labelled with 'CFS' or 'CFS/ME' do you think will (when the ICC criteria are applied), receive the diagnosis of Myalgic Encephalomyelitis? 5% 10% 90%? Because I believe the criteria are too broad and they will simply mean the majority of those with 'CFS' will jump across the 'ME' - and that cannot be right can it? Not without testing that PROVES inflammation of the brain and/or spinal cord.

    Like I say at the moment the criteria is too broad, but as soon as the list of other diseases to rule out is produced and this is added to the diagnostic process that is found in the ICC. I think people are going to be stunned as to how low the figure is, Id say that it will be around the 10% figure Jasons et el have found.

    RE This cannot be a lesson in semantics. If you or I were sent for an MRI scan to see if there was evidence of 'inflammation' and they could not find any - what then? Maybe the previous research hasn't looked in the 'right place' or used the 'right scan' or maybe 'inflammation' can be adequately proved through cytokines? The thing is none of these are in the ICC and in all this time nobody has been able to produce the research of sufficient quality to support claims that Myalgic Encephalomyelitis is the 'correct' definition after all.


    This whole problem has come about for one simple reason, The CDC, and the UK guidelines have always including a pathetically small number of tests that have to be done before people can get a CFS diagnosis, which means that millions are being wrongly diagnosed and given a CFS diagnosis, so every time a group of people are tested for any kind of anomaly they always get conflicting results. This is why Im saying for people to campaign for an increase in testing before people can be diagnosed with CFS. I have written out the kind of testing done by Drs Hyde and Mirza here and provided links to their articles about it. http://phoenixrising.me/forums/show...s-How-to-rule-out-all-other-possible-Diseases

    Previous research has looked in the right place and has been deliberately ignored, Dr Komaroff published work showing SPECT scan anomalies in patients see http://www.ncbi.nlm.nih.gov/pubmed/8141022 before The Fukuda criteria was written, he was one of the writers of the Fukuda criteria and yet the Fukuda criteria says that SPECT scans are not to be done. The CDC knew about the failed MRI tests found in ME patients at Lake Tahoe before writing the Holmes criteria and deliberately left this information out, the UK government wont let ME patients have SPECT scans.

    I certainly wont be failing a MRI because I dont have ME Im one of the misdiagnosed, Not everyone who has ME fails MRIs but the evidence strongly suggests that they all fail SPECT scans, if people didnt fail a SPECT scan, if they were one of doctor Hydes patients hed run more tests on them and find out what the other disease the doctors had missed was, and send them for correct treatment.

    All the best
     
  4. rlc

    rlc Senior Member

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    Hi firestorm, in case for some reason this link http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html I gave you isnt taking you to the right page Ive copied the whole page hear the CDC statement on ME is at the end of the last paragraph.

    Chapter 1.1: Overview of CFS
    Average completion time for Chapter 1 is ten minutes.
    Chronic fatigue syndrome (CFS) is a complex illness characterized by profound fatigue of at least six months duration that results in substantial reduction in occupational, personal, social or educational activities; the fatigue is not improved by rest, may be worsened by physical or mental activities, and is accompanied by characteristic symptoms (impaired memory or concentration, unrefreshing sleep, headaches, muscle pain, joint pain, sore throat and tender cervical/axillary nodes). CFS is marked by a dramatic difference in pre- and post-illness activity level and stamina.

    Most people with CFS who consult health care professionals describe their illness as beginning suddenly over a period of hours or days. In contrast, most people with CFS who are identified in community studies describe a gradual onset of illness over weeks or months. The clinical course of CFS varies considerably among people with the condition and frequently has an intermittent pattern of relapse and remission. As yet, there are no diagnostic tests or laboratory markers for CFS, and its pathophysiology remains unknown. Selected research findings will be discussed in this course.

    Illnesses similar to CFS have been documented for several centuries, some possibly linked to bacterial, viral or protozoal infections such as brucellosis, yellow fever, hepatitis, influenza and malaria.

    CFS was first formally defined in 1988 (Holmes et al.) following studies by CDC in Incline Village, Nevada. However, similar illnesses have been described for many years and known by many names. Current interest in CFS began in the early 1980s when several groups around the U.S. identified patients with chronic fatiguing illnesses thought to be prolonged infectious mononucleosis based on the clinical presentation and laboratory evidence of what was then considered an active Epstein Barr virus (EBV) infection. Subsequent studies of these cases, including one in Incline Village, Nevada, did not support a role for an active response to EBV. When the illness was first defined in 1988 the name chronic fatigue syndrome was selected because a more specific name implying known pathophysiology would have been misleading and because the most common and prominent symptom was found to be chronic fatigue (Holmes et al.).

    Various terms are incorrectly used interchangeably with CFS. CFS has an internationally accepted case definition that is used in research and clinical settings. The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that is not fully supported in the medical literature. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

    Not wishing to demean Corts efforts, but a far better description of the history and background of ME and CFS can be found here http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf Its written by doctor Hyde who has personally examined patients from 59 of the 60 recorded ME epidemics, has been working with ME patients exclusively for about 25 years, seen thousands of ME patients and has read probably everything that has ever been written about it. In this article he explains more about his work and what he does to find all the other diseases that are misdiagnosed as ME and CFS here http://www.wicfs-me.org/Pdf Files/Byron Hyde - Complexities of Diagnosis.pdf and this is his criteria for ME which is better than the ICC as it stands at the moment, (like a say it looks as if there will be a lot more from the ICC writers in the near future) because it is testable http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf it has been submitted to members of the House of Lords and the House of Commons, and instead of using it as a basis for further research the UK government has ignored it and instead given money to Wessely to push graded exercise on people.

    RE Well documented outbreaks of the disease still failed in my view to retain the name, to prove the name was most appropriate, and failed to prevent the absorption of Encephalomyelitis into CFS or Encephalopathy (the latter's use has arguably more going for it).

    The name ME was deliberately abolished by the UK government, in defiance of the WHO, and 50 years of medical research has been deliberately ignored, so that they can push the psychiatric nonsense on people. See Hoopers articles.

    RE When I was diagnosed with Myalgic Encephalomyelitis it was along the lines of that laid out by Dr Ramsay (the only real thing around at the time), yet it involved no tests that I recall other than those which happen presently. I do not doubt that for others testing for specific neurological abnormalities occur - whether they are 'better' at justifying the name I do not know - but for my doctors and consultants it was enough that I satisfied the criteria of the time.

    And those criteria - without scans but based on exclusionary blood tests and a viral case history - led to the diagnosis. Which then became 'CFS' when I saw a US physician and Encephalopathy more recently. I personally have been reassessed on average every one-two years for the last decade in several countries, though mainly in the UK, whenever a relapse occurs brought on by a 'viral infection'. The name applied changes but the criteria rarely do to any significant extent and neither do the tests.

    Unfortunately at the time of your diagnosis the modern imaging equipment wasnt available, but now there is the opportunity to research and use it
    ME didnt become CFS the CDC changed the symptoms and invented a new disease that had far more inclusive symptoms that has allowed far more people to be misdiagnosed with it, compare Fukuda to Ramsey. And exclusionary blood tests have now become so few that they would be lucky to rule out half of all other possibilities I would imagine that when you got your diagnosis under Ramsey definition you probably had a far larger number of test and diseases ruled out then the majority of people gets these days.

    RE Perhaps you could show me how the CDC test for Myalgic Encephalomyelitis and define it because I would honestly like to know. I would also like to know prevalence data for 'ME' in the US. Here in the UK ME in 1999 was put at 0.3-0.5% of the population which then amounted to 240,000 patients. The paper submitted at the time looked at the history of 'ME' from 1919-1999: of course it could have been wrong...but...

    The CDC has not made available any information on how to test for ME, any other information on how they define it ,other than the above statement, They have provided zero information on how many people have it ,and spend a grand total of zero dollars a year researching it, which is why Im urging the US patients to take action and demand that their government do something about this diabolical situation, because now that they have publically admitted that it exists, they can now be pressured into doing something about it.

    Unfortunately all prevalence data is nothing more than guesses, the only real information comes from doctors who can tell the difference between ME and CFS and can tell what the percentage is amongst their patents, and then try and work it out based on the reported number of CFS cases, but like a say I think Jasons figures give a good idea of how low it is.

    I bet you were pissed when the name got changed to CFS, talk about a demeaning name!!! ME should stay as the name because it is WHO approved, encephalomyelitis, correctly implies that it is a neurological illness, and inflammation has been found at autopsy in ME patients. CFS should be completely abandoned as a disease category because it isnt a disease it is a collection of a large number of different known fatigue causing illnesses. And the existence of CFS gives doctors an easy out to just give them a CFS diagnosis instead of finding out whats really wrong with them.

    All the best
     
  5. rlc

    rlc Senior Member

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    Hi Ember hard to comment on the Boxes Rebellion idea without knowing what is going in the boxes!?

    All media outlets lay out very specific guidelines as to how they want to receive information, these days it is usually by Email, the sudden arrival of a large number of boxes is likely to extremely piss them off and alienate them, and leave them with the very annoying job of having to dispose of the thousands of boxes. This annoyance will be compounded if the boxes contain contradictory information that is not backed up by creditable sources. For these reasons I recommend not sending them to media outlets.

    However if publicity stunts are directed at the Government and Emails are sent to the media beforehand so they can go and cover the story, then they are very likely to write about the story! A good example of this would be the AIDS quilt. http://en.wikipedia.org/wiki/NAMES_Project_AIDS_Memorial_Quilt

    If for example A hundred thousand boxes were sent to the Whitehouse with HELP ME written in large letters on the outside, and inside contained the CDC statement

    The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

    An explanation that the US government doesnt spend a single cent on ME research and that all the patients have been abandoned to suffer without help, and a copy of the ICC.

    I would say that there would be a very good chance of this making the news all around the world as long as the media had been tipped of that a major protest was to happen at the Whitehouse before hand, if some ME patients and their families could be outside the Whitehouse with Banners, it would help increase the impact.

    If all effort is directed at one maximum exposure target like say the White house it will maximize the effect, which will be lost if it is sent to multiple targets.

    I would not advise sending to targets like the CDC, NIH, HHS you want to target the employer not the employee, the Government needs to be embarrassed into action, it needs to be brought to Obamas attention, so what better place then to have the boxes pilling up on his front lawn. ME has to be made an election issue, Obama has to know people wont vote for him unless he does something.

    I dont know the details of White house security maybe the boxes would have to be delivered to outside the Whitehouse and have some people pile them up around the perimeter, Maybe another National Monument with less security would be more suitable but it has to be in Washington DC and Highly visible (sorry for my lack of knowledge of Washington monuments Im in New Zealand)

    Personally I think the slogan HELP ME would be a good one to use because of its double meaning HELP ME (myalgic Encephalomyelitis)
    And HELP ME the patient suffering from it. (Start printing the T shirts)

    All advocacy however is normally paralyzed by the belief that everyone has to be in agreement as to what ME is first, and vast amounts of time and energy are wasted discussing this and no agreement is made and not much happens. The community is never going to agree, for the simple reason that there is a vast difference in the amount of Knowledge on the subject that different people have, and that there are a lot of people with different diseases mixed up in the group, and some people when they see something like the ICC has different symptoms to what they have, they start saying that the ICC is wrong rather than excepting that they have been misdiagnosed and have a different serious illness.

    And it all falls down no matter what consensus the patients come to, because as far as the media and the government are concerned the patients opinions on what ME is are completely irrelevant!!!!! The patients in their eyes are not qualified to have an opinion and they will only take action based on information provided by qualified doctors. Which is why I have outlined a plan in the previous posts, to send information from qualified doctors and there contact details to the media. Because nothing is being achieved by us all continually discussing it, it is all about getting information from qualified doctors to the right sources otherwise the world doesnt even know what is going on. We all know that lots of people get misdiagnosed with CFS because of the lack of testing to rule out other diseases. But has anyone ever told the media???? Not to the best of my knowledge.

    I know people have very limited energy for writing letters, I have a lot on my plate at the moment, but if I have time over the next week I will write out a letter to send to the media! Which people can just copy and paste and send to different media outlets, or if they want can use it as a template which they can then personalize to suit themselves. Like I say I would be sending Emails myself but my Email is broken and I cant afford to get it fixed. So if anyone can see the logic of what Im suggesting, go for it.

    All the best
     
  6. Ember

    Ember Senior Member

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    It might be useful for you to post on jimbob's thread. As I understand it, neither the content of the boxes nor the destination is yet decided. I think your slogan, "Help ME," is a great idea, and personally I'd like to see a push now for research based on the ICC. What could be more timely? It would help us all.
     
  7. markmc20001

    markmc20001 Guest

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    RLC. I understand your frustration. However, Can I suggest a couple of other instances that may shed some light on what is really going on here?

    Lyme disease treatment and diagnosis has been ignored, Flouride in drinking water ignored, natural Cancer treatments blocked(see Burzynski movie), Vaccines with mercury and formaldehyde, mercury in teeth fillings, nasty artificial sweeteners, high levels of acetominophen that causes liver damage, and supplements being removed from market one at a time.

    Not to mention if an attorney realizes all these crimes and takes these FDA/CDC tyrants to court, the FDA just outright ignores court orders from judges demanding change from the legal defeat! See John Emord lawyer.

    Before you waste too much time trying to convince government to change it policy towards CFS that has been in affect since the late 1980's(it was correctly ME before it was intentionally messed up in the late 80's). Please watch Burzynski Movie, Under Our Skin, and The Kenneth Friedman testimony, and read Oslers web. My conclusion is this is not an accident, and has been policy since at least the early 80's. It's hard to believe, but how can it be any other way?? the facts are facts. Maybe add Canaryparty.org to your facebook page.

    How can it be our government does not want to help us? Or how can it be the truth doesn't get out? It comes down to the media and strange behavior from people commenting on various articles pretending they doubt XMRV research.

    80% of the media is literally controlled by four CEOS. Just look up News corp in wiki and see how much of the news you read. Once one realizes that the media is feeding you information (to control your reality) you will understand how it all works.

    It's all by design. It's not some large conspiracy. Most people don't know they are being manipulated, not even many members of congress. The media keeps them fooled too. Media includes hollywood.

    Each instance I mentioned above might be explained when taken seperately. However, when one looks at the big picture there is no way so many bad things could happen by accident.

    I risk looking badly here, but if I can convince one person, and they can convice another, and another, and we can all stand up to the crimes. Just maybe we can put an end to the maddness. :D

    I know many are scientists here and can;t just come out and say what they believe. But maybe if the average person can understand the whole mess can be stopped in its tracks.

     
  8. markmc20001

    markmc20001 Guest

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    one more thing.

    I know most people here are generally left brained. You may need a guy in a suit on a well branded TV station telling you this on the 6 oclock news for it to make snese. Or better yet, a medical journal. IT'S NEVER GOING TO HAPPEN.

    You probably want a link to an article to prove it. I can't do that. It would take 100's of articles to create the whole mosaic to illustrate it.

    The whole picture is an abstract mosaic and has taken place over many years.

    It is not just isolated to health either. It happens in other forms of science too.

    Good luck people! We need to catch on fast!
     
  9. rlc

    rlc Senior Member

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    Hi Markmc2001, believe me Im under no illusions, I know full well that there has been a large number of powerful scum bags suppressing information on ME for a long time. As they have with a lot of things along the lines that you mention, I know that the evidence from the very same CDC doctors who invented CFS shows that they did it to cover up ME and they have been lying through their teeth for decades. But there is now a major chink in the armour, if it had just been the ICC criteria being released I wouldnt be bothering to try to get people to take action, it would be like so what, its all very interesting but, you may as well just add it to the eighty years of evidence that proves ME is a very real disease, that the likes of the CDC and the UK government have decided to ignore!

    The thing that has changed the whole situation is that the CDC has it on their website now that ME is a real and different disease to CFS. Which means they cant just turn round and say sorry ME is CFS we just changed the name but theyre the same diseases, as they always have in the past. There is no reason why a news editor cant run a story about ME the same as any other disease on the planet.

    I do know that most of the worlds media is controlled by a few people which may cause problems with getting the story out, but it can be done, it has happened before check out these videos

    http://www.youtube.com/watch?v=Om1cEPxLfyM&feature=related

    http://www.youtube.com/watch?v=PUFsjhjCaOc&feature=related

    If people strike out with the major news outlets try small local papers find news sources that arent controlled on the internet, send information to Canadian and Australian media outlets, and the US media might pick up the storey from them. The media doesnt always side with government remember Watergate. They will often attack governments if given the right kind of information, like I have outline in the previous posts; it has to be from creditable sources so they dont get sued.

    Hillary Johnson managed to get stories about her book Oslers Web which directly attacks the CDC in Rolling stone, Good Morning America, Prime Time Live, Crossfire, CNN, and in numerous other radio, newsprint, and television venues, including USA Today, Newsweek, the New York Times, the Los Angeles Times and Scientific American. See http://www.oslersweb.com/bio.htm

    People just have to be brave and try and try again and sooner or later the story will break. If nobody takes action nothing will ever change, things that seem impossible do happen, who would have imagined at the start of the year that Gaddafi would be toppled.

    All the best
     
  10. markmc20001

    markmc20001 Guest

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    Sweet! Glad you get it.

    :thumbsup:
     
  11. Firestormm

    Firestormm Guest

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    rlc,

    Thanks for the replies.

    So you still maintain that Myalgic Encephalomyelitis is the correct name for a disease that the ICC is purporting to be separate from (in the US) Chronic Fatigue Syndrome? I just don't buy it sorry.

    The research showing brain anomalies do not equate to 'encephalomyelitis' and the autopsies are how many exactly? Two? Is this enough to base a whole new criteria around (a criteria that does not even mention such matters)?

    They seem to have jumped the gun as far as I can tell. And your estimates rlc of 10% based on Jason et al.? I doubt very much that this figure can be as low for these criteria - look at the way they have been greeted by the forums and elsewhere.

    Could you link me to the research from Jason please. I have heard the figure used before but have not read the context. Thanks.
     
  12. Cort

    Cort Phoenix Rising Founder

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    Exertion Based Lab Tests - This is the crucial question I think and what fascinating answers we might get. Because the ICC is 'exertion based' ie it identifies ME as a disorder that is unique in how it responds to exertion then exertion based tests - such as using exercise to measure the Lights fatigue and pain receptors or the Pacific Fatigue labs metabolic abnormalities or stress tests involving cognition, etc. or brain blood flow following exertion, etc. should demarcate these groups pretty clearly. If this is true then the path to legitimizing the new definition is not that far off I wouldn't think.
     
  13. Firestormm

    Firestormm Guest

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    Hi Cort,

    Yes even under the existing labelling, Post Exertional Malaise or now PENE does seem to be acknowledged as the 'defining symptom' or exception even when looking at other conditions that have 'fatigue' as a tenet also.

    In a recent British Medical Journal letter it was even suggested that PEM be 'officially' recognised as such for CFS/ME:

    'The one advantage of the Canadian criteria over alternative diagnostic criteria is that they require what many would regard as the characteristic feature of CFS, post-exertional malaise (6). This is something that may need incorporating in future definitions to help differentiate CFS from more general fatigue.' Crawley, Miller and White http://www.bmj.com/content/343/bmj.d4589.extract

    Though it is a feature in the existing NICE Guidelines under the 'fatigue':

    '1.2.1.2 Healthcare professionals should consider the possibility of CFS/ME if a person has:

    fatigue with all of the following features:

    ? new or had a specific onset (that is, it is not lifelong)
    ? persistent and/or recurrent
    ? unexplained by other conditions
    ? has resulted in a substantial reduction in activity level
    ? characterised by post-exertional malaise and/or fatigue (typically delayed, for example by at least 24 hours, with slow recovery over several days)' http://www.nice.org.uk/nicemedia/live/11824/36191/36191.pdf

    So it is there and recognised - but just not 'tested'. I mean essentially anyone can say they 'have it'.

    In an ideal world there should be more to test for than this though, even if it is deemed at this point as a defining feature, especially in order to validate and define Myalgic Encephalomyelitis.

    It's a bugger isn't it? I mean one exerts - mentally or physically - and one can test the level of input that goes into achieving said exertion (I prefer that term personally to 'exercise' but there we go), and then one must surely have a means to test what happens as a result.

    With me - generally - if I 'push myself' in terms of mental or physical exertion - generally - then 'payback' occurs not immediately - though I do of course feel 'exhausted' - but the 'payback' for me is the next day or the day after.

    And 'payback' is in terms of worsening symptoms generally, and especially 'feeling run-down'. There is a word for that that some do not feel justifies the feeling:

    Malaise: 'an indefinite feeling of debility or lack of health often indicative of or accompanying the onset of an illness'

    Personally I tend to 'like' it.

    If someone forced me to push myself and to achieve a set goal e.g. walking the length of a football pitch, then tested how far I got, how long it took and what 'state' I was in; then asked me to repeat the exercise again at intervals until I could not manage to; and then let me 'rest' until I felt I could go through the process again...

    All of that would still need to be measured in some way that is acceptable to medical science and then when I collapsed, they would have to test me for reasons as to why I collapsed. Why I am suffering 'fatigue' as well as anything else I guess.

    And there's the clincher. How does one test for those reasons? If it were that 'easy' it would surely have been done by now? I would like to see this sort of research because personally, I think it is about time they tried to quantify the extent of my symptoms and how they fluctuate and the reasons why they fluctuate.

    Can this be done without knowing a cause? Yes I think it probably can. Quite how I don't know but it will be controversial I have no doubt. Such testing could and should include mental exertions and my ability to perform mental arithmetic or to count coins, move shapes into their correct holes, multi-task, read, retain information etc. etc. Quite a project for somebody - but all this will help 'flesh-out' and quantify my condition and capability.

    The Chalder Fatigue Scale will need revising for sure :D
     
  14. floydguy

    floydguy Senior Member

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    Until a simple diagnostic test that can be used in the average MDs office is developed PEM/PENE should not be used. As stated above, people will either say they have it or some doctors will just mark it down with only vague references. Personally, I am uncertain PEM should be a defining factor. I failed the exercise test but don't usually have PEM or problems exercising. I think it is a distraction from the core issues of immune and neurological dysfunction. There are more proven tests in these areas that should be used at this time.
     
  15. mon me

    mon me

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    Floydguy, could you please elaborate on how you failed the exercise test but can still exercise and don't experience PENE. thanks.

    I can exercise as long as I stay within my boundaries which I know very well at this point but I can't do any high intensity aerobic typed exercise or go over my limit or the PENE will set in.
     
  16. Firestormm

    Firestormm Guest

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    I think one of the problems with PEM/PENE is defining 'it'. I mean what is 'it'? How do you quantify 'it'? How does one person have 'it' and another not?

    And Flloydguy makes an excellent point. Should PENE be a central part of Myalgic Encephalomyelitis or CFS/ME or CFS even? Either now or even when a specific test for 'it' is developed?

    I mean look at the history - when did PEM/PENE become a tenet of Myalgic Encephalomyelitis? Could it be argued that 'it' isn't? And that 'it' is something that 'only' those with CFS have?

    Interesting...
     
  17. mon me

    mon me

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    I can't explain what "it" is but for me it's not what I would describe as "malaise". For me it's neurological, can't comprehend a sentence, can't speak properly, can't stand upright or walk a straight line, pressure in my head, shakiness, feeling hot, can't handle anything etc. etc etc

    I wonder what other illnessess/diseases describe these symptoms when they "overdo" themselves???
     
  18. Firestormm

    Firestormm Guest

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    You describe how I feel most of the time very well. Exertion above and beyond my limit serves only to exacerbate this. Do you find it the same with mental exertion as with physical? I certainly do but I also find that if I 'push' one then I cannot do - or can do to a lesser extent - the other. Weird, huh?

    My reference to 'malaise' was the feeling of being 'run-down' as if something was running me down as in I was getting the flu. Again, I feel this most of the time, but exertion above and beyond my limits exacerbates this. What you describe above I would suggest are specific symptoms and as I said they would apply to me as well.

    The thing is I guess is how to quantify them and to measure that they are 'worse' after exertion and/or 'better' after 'rest' - a conundrum? Or can this be done at the moment if the 'right' tests were applied I wonder?
     
  19. Gemini

    Gemini Senior Member

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    Agree esp re: measuring brain blood flow following exertion.

    Be nice if you could get copyright permission to post on PR the SPECT scan images of brain blood flowfrom the ME/CFS patient tested before exercise, immediately after, and 24 hours later published in the Preface of the book "The Clinical and Scientific Basis of ME/CFS" page vii.

    A picture is worth a 1000 words...
     
  20. mon me

    mon me

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