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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. Cort

    Cort Phoenix Rising Founder

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    The thing for me is that both Pandora and the CAA both published basically supportive stands on the new definition - PANDORA particularly so....yet the response was to refer what either organization didn't do in the past. That will get us nowhere! If organizations provide an opening for interaction then I think we should act on that - rather than rehashing what they did or didn't do.

    The time is now - you can focus on what they haven't done in the past or you can focus on the fact that having a organization like the CAA to back the definition is an good step to getting the definition into the scientific arena. If we want to get the definition enacted its going to take putting aside old grudges and applying forgiveness to what we feel are mistakes and focusing on the opportunities that are present now rather than the problems in the past. As soon as you start addressing past problems - you take your eye off the opportunity that is present now....

    I wonder if the ME community is ready to focus on the getting the job done or if its more interested in being factional. I think most people are more interested in working together to make a difference than in being right about who's the bad guy.

    I think if you decide on the greater good - working together with your neighbor to get something done that benefits us all - even if you don't particularly like your neighbor - then we're in a much better place.
  2. rlc

    rlc Senior Member

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    Hi Cort, the point with emphasising that groups like the CAA have continually got it wrong in the past is so that people are aware of this, and that it is still the same people in charge of these organizations and to expect them to suddenly do an about face and to start doing things right is more than a little unrealistic which is why I urge people to take the matter into their own hands and not rely on them.

    The CAA is certainly not backing the ICC definition, they are corrupting what it says to keep their own agenda going, as their own web site says this.

    A large international panel of experts published a new definition of myalgic encephalomyelitis in the Journal of Internal Medicine, recommending it replace CFS - the name and definition.

    The ICC is not recommending that their definition replace CFS the name and the definition!!! The ICC is saying that the patients who meet the ICC definition are to be removed from the Reeves and NICE definition and that they have the different disease ME, all patients that do not meet the ICC criteria are to remain with a CFS diagnosis and the Reeves and NICE criteria remain!!!

    So once again they are saying that everyone has the same disease which has always been their view, which is totally opposed to what the ICC is saying.

    Its not about who is the bad guy its about recognizing that the old methods dont work and that the CFS orgs are ineffectual and have not improved the situation, and the is very little chance that they will in the near future, and people have suffered for far too long already. Weather the CFS orgs embrace the new definition or not is not going to change the situation its just so many words on a web site!

    What Im trying to say is that with modern technology and the right information individuals can take action by themselves that could lead to rapid improvements now.

    The fact that the CDC officially admits that ME is not CFS is a massive opportunity to get things changed once and for all.

    If someone with a working Email can send information like I outlined in my previous post to a media outlet like the ABC, which because it is written by the likes of qualified doctors will be taken seriously. There is a very good chance that the next thing that may happen is that the ABC is interviewing the CDC on television and asking them questions like you say on your web site that ME is not CFS, what is the deference? And that it has its own definition, please provide that definition, is this the same as the ICC, you say its linked to previous outbreaks; it must be infectious what is being done to stop more outbreaks and identify the cause? There are doctors like Hyde who says it can be diagnosed by SPECT scan, what research is being done about this, they also say that large amounts of people are misdiagnosed with CFS because the testing in the CFS definition is not large enough, what are you doing about it?

    If the CDC is being hounded by the press they will have to do something, why isnt the CDC being hounded by the press? Simply because nobody has ever told the press theres a problem and provided them with the correct information on it, instead its largely been left to the CFS orgs to do something and they have never given the press the correct information so nothing has ever changed.

    Legally the CDC because it has publically admitted that ME exists has to do something about it, BUT only if there is a group of patients who say that they have it and are demanding that something is done about it, if the CDC dont do anything they are wide open to a class action law suit. But if the US patients dont ask they wont get. And if they keep saying they have ME/CFS or CFIDS they also wont get anything because they are not medically recognized disease names and the CDC can ignore it.

    But these days individuals can change the world with modern technology the CFS orgs arent necessary to make a change, The information on ME not being CFS, that there are tests like SPECT scans that the likes of Dr Hyde have got the case notes to prove work, that large numbers of people get misdiagnosed because of the woeful testing should be all over the worlds media and brought to the attention of politicians, the wider medical community and the public, not stuck on some web sites which nobody unless they have a specific interest are ever going to read.

    I certainly think it would be nice if the ME and CFS groups would help each other out, put there has to be a recognition that people have different illnesses for that to be successful. Personally I think sick people should help each other out no matter whats wrong with them.

    In regards to the CFS orgs and this statement its fine to work with your neighbour for the greater good, thats fine in principle, but personally if every time my neighbour helped me out, it lead to the house being burnt down, Id stop asking them and do it myself. The CFS orgs arent helping and are not likely to in the foreseeable future, my advice to people is to take the power back into their own hands and use the technology and correct information to contact people such as the media and politicians who have the power to make a real difference if they are finally given the correct information!!!!

    All the best
  3. markmc20001

    markmc20001 Guest

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    Hey RLC, I agree with the overall thrust of your post. Need to point out something about media people need to understand.

    Contacting the wrong media outlet, is about as helpful as asking Simon Wessley to help you treat ME.

    Part of the reason advocacy is so ineffective, is people are complaining to the news outlets that are "in bed" with the same people who have been jerking us around all these years.

    Take for instance Anderson Cooper on CNN. He is the same guy who did the Andrew Wakefield smear interview one night. Anderson Cooper interview was obviously staged to the astute/alert viewer. The same kind of thing happens EVERYDAY in the many of the corporate owned media outlets above.

    The Media, the government, and Big business work together to stage news for public consumption. This is to fool/control the unsuspecting masses. The government and Corporations set propaganda/PR campaigns to persuade the unsuspecting.

    Remember the 80 year old upper middle class lady (the news said had CFS) sitting in her maticulously maintined house, with a fire in the fireplace, jogging on the beach, playing with her dogs, watering the yard? The bucolic lifestyle that is non-existant for 75% of the population? It reccommended CBT, and GET..... THAT is PROPAGANDA. planted for your consumption. So subtle, most people won't even get it now that it has been pointed out to them.

    This is not to say each news company doesn't have well meaning people. Just many of them are spoon fed a story, or information is edited in without them knowing.

    May I suggest some other news outlets, or specific reporters who will distribute real journalism on occasion?


    http://www.democracynow.org/
    Amy Goodman

    Sharyl Attkisson.
    http://about.me/sharylattkisson

    look at Attkisson's quote!
    http://www.theyoungturks.com/

    http://www.pbs.org/moyers/journal/index-flash.html
    Bill Moyers

    Nakedcapitalism.com YVES Smith (she won't do a write up on CFS stuff, but is CFS empathetic has posted links for me before that allow commentary below)

    http://www.alternet.org/

    Salon.com
    Glenn Greenwald.
  4. rlc

    rlc Senior Member

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    Hi Markmc2001, thanks for providing the additional links, obviously Im in New Zealand and my knowledge of US media outlets is somewhat rudimentary! Yes you are right that some of the media outlets have not been exactly friendly towards CFS and ME, and especially in the UK the media has been extremely close to the government there, hopefully this will change soon as the government is distancing itself from the Murdoch Empire because of the phone hacking scandal.

    In the US the situation has changes because the CDC now says that ME is a different disease to CFS, Me has been legitimized by the government so the media is now free to talk about it, its just that nobody seems to have realised what the CDC has done.

    However part of the problem also lies with the approach that advocacy has taken, the bleeding heart, Ive been sick for years and nobody is helping me is never going to work, for the simple reason that peoples personal stories arent news!!!! Its not something that a newspaper can make a major storey out of that is going to interest a lot of people and sell a lot of copies of the newspaper, they are businesses and want stories that will sell papers and make money. Media outlets are also not interested in publishing articles attacking government or people in positions of power unless the stories can be verified by independent sources (they dont want to be sued!!!!)

    It has also not been helpful that a lot of people have chosen to use the names CFIDS and ME/CFS because if a journalist looks these names up theyll find that there not recognized medical names and are names being promoted largely by patient groups on the internet, The media doesnt want to get involved in a he said, she said campaign between patients on one side and the government and medical community on the other, unless they have facts backed up by independent sources that have qualifications in the medical field i.e. doctors, Its just the way that they work there businesses that dont want to risk losing a lot of money by being sued.

    But if people look at what happened with XMRV a report is published by people with qualifications the WPI, saying there is a possible link between a retrovirus and CFS, The media look at it see that the people are qualified, it is an interesting story that will catch peoples attentions its not saying anybody is wrong or bad, so if they publish it they wont get sued, so the media look at it see that it ticks all the right boxes and it is published all around the world, creating the biggest worldwide interest in CFS ever.

    The statement by the CDC that ME is a different disease to CFS is a wonderful opportunity!!! Because we can draw the medias attention to this and they will see that nobody is attacking the government its actually the government that is saying it!!! So no problems for the media of being sued or upsetting the government,
    The story behind ME does make interesting news that people will be interested in. It is a fascinating storey, the fact that there was a disease ME that for over fifty years caused major epidemics throughout the world, that was recognized by the worlds medical community and vast amounts of research by respected doctors was published on it, all of a sudden was deemed in 1988 to not exist by the CDC and that all of a sudden this new illness was declared to exists CFS with different symptoms and they said that that was what ME had been all along, and now all of a sudden the CDC have publically said oops awfully sorry ME does exist and is different to CFS we got it wrong.

    If this is brought to the media attention along with the fact that the ICC has published a criteria for ME, so there is a large group of qualified doctors that are in agreement with what the CDC are saying, and that they are saying that there are large numbers of people with ME that have been forgotten about because of the confusion with CFS and that something really needs to be done about it to find treatments and cures for them. The articles By Dr Hyde that I put in my previous post are wonderful to help with this, one because hes qualified and to because they contain large amount of fascinating information and explain the History and medical science behind it all which will give the journalists a lot to work with.

    The same applies with the situation about people being misdiagnosed with CFS because of the inadequate testing required by the CFS criteria, Because the articles written by doctors Mirza and Hyde are written by qualified medical people that are laying out what the faults in the testing are journalists will have no problem printing this information, they can both be contacted for interviews, and the fact that it would appear that large numbers of people are being misdiagnosed with CFS and left to suffer for the rest of their lives, when they often have treatable illnesses is something that is extremely news worthy!!! Because its coming from qualified doctors, the media can say this doctor says which means they have no legal responsibility for the statement, its coming from doctors so it has legitimacy, so they will be happy to print it.

    Im not saying every media outlet will immediately run peoples storeys, but if people understand how the media works, and people leave out their own personal stories, and their understandable rage towards certain establishment!!, and just outline the facts presented by the CDC, ICC, Hyde, Mirza, give them the link to the old research which backs everything up, and just take the approach of heres this information which would appear to be very important and very newsworthy and is backed up by qualified people could you please investigate it. Then there is a very good chance that some media outlets will run with the storey because they have no reason not to, the CDC statement gives them government clearance to talk about ME!!! There interesting storeys backed up by medically qualified people so it will sell, If one media outlet runs a storey the rest will follow suit, as happened with XMRV, because no media outlet wants to be seen as the one that missed the storey. This will then create worldwide interest and scientists and doctors will be popping up out of nowhere to get involved just as they did with XMRV.

    The CDC statement that ME exists gives every researcher and doctor in the US the green light to investigate it, but because no action has been taken to make the world aware of it, these people arent even aware of the opportunity, the US government has legitimized ME by the CDC statement, which if it is made aware that there are a lot of people with ME and that the media knows about it, the US government will start to make money available for research, they cant not, the ME community will be able to take legal action against the government if they dont!!

    If people can take action now to contact the media and government and start the ball rolling this could all start happening in the near future, and if the misdiagnosis and lack of testing problem is brought to the attention of the public it is quite likely to lead to proper testing becoming mandatory, only when the ME patients and the misdiagnosed are removed from the CFS group will it become possible to tell if there is some other as yet unidentified illness affecting some people in the CFS group, then this can then start to be investigated!!

    This way everybody!! no matter what illness they have will be identified and helped, The US is not just the worlds military power, it is the worlds medical power, what it does is followed by the rest of the world, if the US properly recognizes ME and researches it the rest of the world will follow, if it says that people have to be extensively tested before people get a CFS diagnosis the rest of the world will follow. The UK government is not going to be able to maintain its position for very long if it is the only country on the planet that doesnt recognize ME.

    People in the US need to realise that times have changed, Reeves who has always been the one who is mainly responsible for denying MEs existence, from the start at the time of the lake Tahoe epidemic, and inventing CFS, is gone from controlling the CDCs view on ME and CFS, The CDC statement that ME is a different disease, gives everyone the green light to do something about it, so go for it and dont waste time waiting for the US CFS orgs to get their act together!!!! Youve suffered for far too long already!!!

    All the best
  5. Cort

    Cort Phoenix Rising Founder

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    I just want to point out that more SPECT and PET scan studies have been done in the US than anywhere else and while the CAA has not funded studies to specifically prove Hyde's assertion they are funding two studies that could support; they have been funding studies on brain MRS scans which show possible mitochondrial problems in the brain and a study seeking to explain the low blood flows to the brain.

    I don't see evidence of a personal 'agenda' in this type of research. The CAA, for example, would love to uncover the cause of ME - think how many donations would flow to their coffers - and some of the research they've funded will go to support Hyde's claims (particularly the vascular research since he posts the vascular system may be the key issue in ME.

    So while its true they have supported Hyde directly or a switch to 'ME' ( the CAA doesn't even use 'ME/CFS') I don't see any evidence in the research promote that they have an agenda against the type of research that supports ME agenda's.

    Patients with chronic fatigue syndrome have reduced absolute cortical blood flow.
    Yoshiuchi K, Farkas J, Natelson BH.
    Clin Physiol Funct Imaging. 2006 Mar;26(2):83-6.
    PMID: 16494597 [PubMed - indexed for MEDLINE]
    Related citations

    5Monozygotic twins discordant for chronic fatigue syndrome: regional cerebral blood flow SPECT.
    Lewis DH, Mayberg HS, Fischer ME, Goldberg J, Ashton S, Graham MM, Buchwald D.
    Radiology. 2001 Jun;219(3):766-73.
    PMID: 11376266 [PubMed - indexed for MEDLINE] Free Article
    Related citations

    10.
    Validation of CBF measurement with non-invasive microsphere method (NIMS) compared with autoradiography method (ARG).
    Kaminaga T, Kunimatsu N, Chikamatsu T, Furui S.
    Ann Nucl Med. 2001 Feb;15(1):61-4.
    PMID: 11355785 [PubMed - indexed for MEDLINE]
    Related citations


    6.
    Single-photon emission computerized tomography and neurocognitive function in patients with chronic fatigue syndrome.
    Schmaling KB, Lewis DH, Fiedelak JI, Mahurin R, Buchwald DS.
    Psychosom Med. 2003 Jan-Feb;65(1):129-36. Erratum in: Psychosom Med. 2003 Mar-Apr;65(2):210.
    PMID: 12554824 [PubMed - indexed for MEDLINE] Free Article


    17.
    MR spectroscopy and SPECT capture chronic fatigue.
    Krotz D.
    Diagn Imaging (San Franc). 1998 Oct;20(10):23-5. No abstract available. Erratum in: Diagn Imaging (San Franc) 1999 Jan;21(1):23.
    PMID: 10187439 [PubMed - indexed for MEDLINE]

    Last month Komaroff in the US published an EEG study.
  6. Cort

    Cort Phoenix Rising Founder

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    I agree that statement was incorrect but did it indicate some sore of agenda the CAA has or was it just sloppy? I suggest sloppy. In other parts of their response they stated

    and

    and they identify important issues such as how people with 'ME' will get access to disability, health care, etc. When you change a name or a definition you have to make sure that all the official recognition from the govt, insurance agencies etc. from the original name gets transferred over. Changing the name and definition could give insurance companies and the govt an out since they've been referring to a specific disorder with a specific definition. That's the bad news about change and, honestly, I'm glad the CAA (somebody :)) is looking at those aspects.

    On the other hand the changed definition would hopefully result in more progress more quickly on the research front - assisting legitimization of the disorder - with all the help that brings.
  7. Cort

    Cort Phoenix Rising Founder

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    As the former post showed there has been and continues to be research into SPECT scans in 'CFS', The problem is that no one, I don't think, has tried to differentiate the SPECT scan positive patients from the SPECT scan normal patients and then applied tests to those two groups. If Hyde is right then that would tell the difference.

    I would note that Hyde has not done this either. He has years of data and he should be able to show that SPECT scan positive patients are different than SPECT scan negative patients and that they have more of all the problems that he cites in his definition; that is, the SPECT scan positive or ME patients tend to have POTS while the SPECT scan negative patients (CFS) don't; that his ME patients have much higher rates of thyroid cancer, Renauds Disease, Ehlors Danlos Syndrome, low blood volume, (natural killer cell functioning - even though he rather strangely never refers to its), low pump volume, neuropsychiatric problems, etc. and that all the SPECT scan patients have had, at least so far as he can tell, acute onset and the non-SPECT scan patients have gradual onset.

    I'm just a laymen but I don't know why he wouldn't be able to put together a retrospective study dividing patients on the basis of their SPECT scan results (YES-ME, NO-CFS) and see how the two groups compare. I'm sure it wouldn't be easy but that might really make a difference!
  8. Cort

    Cort Phoenix Rising Founder

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    I think that's a great idea. This is a STORY. You have a wide group of researchers and physicians saying that a major medical institution in the federal government has gotten it wrong about an important disorder and that that has really cost patients - and what is the govt's response to that? (I'm going to email the CDC and see what they have to say? )
  9. rlc

    rlc Senior Member

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    Hi Cort, let us know what the response from the CDC is!! But this statement isnt quite correct

    1. You have a wide group of researchers and physicians saying that a major medical institution in the federal government has gotten it wrong about an important disorder and that that has really cost patients - and what is the govt's response to that? (I'm going to email the CDC and see what they have to say? )

    The CDC has publically said on their web site that they get it got it wrong!!! Not that other researcher and physicians are saying their wrong and the CDC is sticking to its previous false position, The green light is there for people to get organised and make it known to the media and politicans, and thereby force the CDC to take action on their admitting that ME is not the same disease as CFS, and that there are a lot of people who have ME who have not been receiving any proper help, and that there is not one dollar of government funded research into this illness!!

    Obviously everyone is entitled to their own opinions, but I do find your continual defence of the CAA somewhat puzzling, this is an organization that has, employed ex CDC members when it was the CDC who has been responsible for creating the mess in the first place, they have taken millions of dollars from the CDC and used it to promote the Reeves definition which everybody knows is appalling, they helped saved Reeves from being found guilty of misappropriating millions of dollars that the US government had allocated for CFS research, http://www.oslersweb.com/newsletter.htm so that the US patients had to suffer, with him being left in charge at the CDC inflicting his garbage on them, when Hillary Johnstons Book came out exposing all the lies and corruption that the CDC had been up to, instead of support it and using the brilliantly researched information in it to make a change, they instead attacked Hillary Johnston, the majority of people seem to get that the CAA has been in bed with the CDC for a long time and is not acting in the best interests of the patient as this poll shows http://phoenixrising.me/forums/showthread.php?10169-Caa-poll

    You might say that this is what happened in the past, but its still the same CAA, they havent sacked all the people responsible and employ people that are up to date and are working in the best interests of ME and CFS patient, its still the same people pushing their same false agenda on the patients, to expect them to suddenly change is not a realistic expectation, which is why I advise people not to rely on them and take action themselves.

    The CAAs agenda, their view of the situation has always been that CFS and ME are one disease, the same view as the CDCs, and have not been open to ever looking at any other view despite all the scientific evidence that showed that their view is wrong! Even when the CDC has changed its view recently they have still not changed their view. That the CDC is now saying that ME and CFS are two different diseases is the single most important event in this illnesses history since 1988!!! And none of the US orgs have picked up on it and told the US patients. Which is why its being left to a sick person in New Zealand to try and bring this to the attention of the US patients.

    You say that the CAA would love to uncover the cause of ME the CAA doesnt even recognize MEs existence!!

    The CAA can fund whatever research it wants, but until it recognizes that ME and CFS are different conditions and that the CFS group has a large number of misdiagnosed people amongst it, and makes sure that the different groups are separated then it will continue to be, as it always has been in the past a complete waste of every bodies time and money!!!!!

    You say that that maybe the CAA saying on their web site, that the ICC is saying that CFS should be renamed ME, when this is the complete opposite of what the ICC is saying, might just be them being sloppy, I take a slightly more suspicious view, because they have corrupted it, so it fits in with their view that CFS and ME are the same disease, if its a mistake, Id say its not sloppy, its downright incompetent, but we do have a tendency to call a spade a spade where I live.

    You say that they identify important issues such as how people with 'ME' will get access to disability, health care, etc

    They dont because they dont recognize ME, they group everyone together which isnt helpful as different illnesses have different needs.

    1. You say When you change a name or a definition you have to make sure that all the official recognition from the govt, insurance agencies etc. from the original name gets transferred over. Changing the name and definition could give insurance companies and the govt an out since they've been referring to a specific disorder with a specific definition. That's the bad news about change and, honestly, I'm glad the CAA (somebody :)) is looking at those aspects.

    On the other hand the changed definition would hopefully result in more progress more quickly on the research front - assisting legitimization of the disorder - with all the help that brings.

    Sorry but it appears to me that youve missed the whole point of what Im saying.

    Its is the CDC and therefore the government that have recognized that ME is a different disease to CFS, so there is no problem with official recognition from government, the ICC is late to the party! Its now up to the US patients to get the government to take action on helping ME patients!!

    The CDC statement is

    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.

    Link http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html

    Regarding Dr Hyde, I think people have to understand that he is just one man, he is a diagnostician not a researcher, and most of his time is consumed helping to diagnoses and organize treatment for patients, he apparently has a publication on SPECT scans in the pipeline. But to do the kind of double blind studies which will prove what he is saying about SPECT scans, they will have to be reasonably large double blind studies which cost a lot of money, take a lot of time, and are something that is very hard for one person to do by themselves, while looking after patients, it would be really good if the CAA would fund it rather than ignoring his work!

    There is a very good reason why Dr Hyde doesnt focus on NK cell dysfunction; it is because there is a vast amount of research that shows that NK cell dysfunction is a very common occurrence that is caused by a vast amount of different illnesses, so therefore as a diagnostic test it is a complete waste of money, all it proves is that your sick with god knows what!!!

    Instead what Hyde has done is take a far more logical and structured approach, and explaining this might help people understand why he is so certain about what he says about things like SPECT scans. What Hyde has done is to extensively train himself in different fields of medicine, and how to understand the modern imaging equipment. So what he does with all the patients is he maps out and tests every single part of the patients body and tests them for every known illness that could possibly cause the patients symptoms. In doing this he finds the real cause of the patients illness in about 75% of his patients and that that cause is a known medical condition that the patients doctors have missed, he then sends these patients to be treated for their real conditions.

    So with the remaining 25% he knows that they have no other recognized medical condition, so therefore they can only have ME, and it is in this group that he has found the results such as failed SPECT scans that he outlines in the Nightingale definition, these are results definitely found in ME patients, because he has systematically ruled out all other options. Which has then left him in the position of being able to just very quickly being able to do the steps outlined in the Nightingale and the diagnosis of ME is made, but because he is very professional he will still go and test his ME patients for other diseases, because he is aware that having ME doesnt make you immune to having other health problems as well.

    When you compare it to the approach taken by almost all the other researchers, which is get together a group of patients diagnosed by using one of the CFS definitions, then they dont tests them extensively to rule out other conditions, which means they have a un homogenous patient group who have a verity of different illnesses, then tests them all for something like say NK cell dysfunction, come up with completely contradictory results. And then sit round scratching their heads wondering why they cant make any sense of the large amounts of extremely contradictory results they get. Which is what has happened in almost every single piece of research since 1988, and it has been a total waste of time and money and just left everyone completely confused! Personally Im stunned that these so called experts, never have the blindingly obvious thought go through their heads that maybe the reason that so many patients have so many different results is because they different diseases!!!!!!!!!!!!!!!!!!!!!!!!!

    Like I say everyone is entitled to their own opinions, and its nothing personal, but myself and a lot of other people view the CAA and other US orgs as a major part of the problem not a cure for it!

    The message that Im trying to get across is that everything has changed with the CDC admitting that ME is a different diseases to CFS, and that the US orgs are ineffectual at dealing with these kinds of issues! So therefore a different strategy is needed!!!!!!

    As they say the definition of insanity is doing the same thing and expecting a different result!!

    If people take the time to read what Im saying and get an understanding of how the media works, that it is a business, and politely provide them with the sorts of information that I have provided in my first post in this thread, that there is nothing now stopping the media talking about ME in the US, it is recognized by the CDC, the problem is the CDC is sitting round waiting for some people with ME to ask them to do something about it, No demand no action, I would recommend rather than focusing on approaching the CDC directly, approach the government, contact senators and congress men etc and get pressure for the CDC to act to come from above and the media, if you want something done dont talk to the employee talk to the employer!!! Because Im also saying to put pressure on about the people misdiagnosed with CFS because of the woeful amount of testing that is required before a CFS diagnosis is given, this will if successful help everyone, the different groups will be separated, and helped with their real problems, not all being lumped into one group! The ME patients will get help, the misdiagnosed will get help, and the people that are left over can then be investigated to see if there is some other as yet unknown disease effecting them! This course of action has a reasonable chance of success!!! Waiting for the CFS orgs to get their act together it just going to lead to people suffering for a lot longer!!

    All the best
  10. Cort

    Cort Phoenix Rising Founder

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    You have a good point - I think one problem is that the CDC was referring to disease characterized in the outbreak literature and the new ME definition is a bit different; the outbreaks are not mentioned and while post-exertional problems are prominent in the chronic illness phase they tended to focus on strange neurological symptoms like paresis (inability to move a limb), swollen lymph glands were relatively rare and there were a few other differences.

    I think the new definition fits well with the descriptions of ME in its chronic phase as reported back then but you can make the case that the CDC was referring to one disorder - ME in the outbreaks and that the ICC refers to ME in its chronic phase. I think the CDC will have to come up with a new response to this 'new' ME.
  11. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Lots of stuff here - I know I'm a bit of an outlier on the CAA :rolleyes: I'm very happy with what Suzanne Vernon's done with CAA research and the creation of the Biobank. You're looking at this from an ME centric viewpoint and it all makes sense from that viewpoint. Until now I've never really delved into ME because, honestly, I thought it was a hopeless cause. Until ME/CFS came along I felt we were stuck with CFS until they could find subsets and then that would break the disorder leading to new name.

    Now ME to my great surprise is in the spotlight. What I'm trying to say is there didn't seem to be a viable alternative to the Fukuda definition so I can understand the CAA going along with that as has, I believe, every other organization.

    It's true that anybody could have launched an attempt at an ME definition or bringing ME back into the spotlight. It took 2 people in Canada (Carruthers and Sande) to do that; the new definition truly is an example of the ability of two driven people striving to make a difference. Should the CAA or Meruk or Invest in ME or the other orgs have taken this on? Sure, in retrospect - you could argue yes. On the other hand there are many things that need to be done - all these organizations are small and overloaded and I'm just glad Carruthers and Sande did that.

    There's still a long way to go to get the definition into the research agenda - that's the most critical thing for me and hopefully it will happen.
  12. Jill McLaughlin

    Jill McLaughlin *****

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    Cort, If you missed it OK, but the CAA, Pandora and the offshoots were well aware of ME, which is what precipitated the banning and censoring of any ME discussions. Even discussion lists would reduce it to off topic. We were stuck with CFS due to their ignorance or inability or unwillingness to do anything about it. This is not advocacy, thus my comment that we really haven't had any to speak of.

    In the advocacy arena it has never been his bad, when people who were just advocating for a proper diagnosis were banned and attacked. They tried the set up as unity and infighting, but this is no longer accepted as a valid issue. In effect, it is not working anymore.

    ME advocates were pushing for recognition, and Pandora/MCWPA and offshoots were undermining with the creation of the ME/CFS and CFS/ME misinformation. They tried the set up as unity and infighting, but this is no longer accepted as a valid issue. In effect, it is not working anymore.

    ME advocates pushed and I am sure had an influence on the new criteria, which was originally being billed as an update of the CCCC - in spite of these groups working against us. We need to educate and counter the misinformation put out by our so-called advocacy groups. It IS necessary to explain, as the media gets mixed and contradictory messages.

    In retrospect? If you want to maintain that they they just didn't know, that in and of itself would belie their incompetence (as simply slow learners?) and underscore reasons not to support or trust them. They can't attack and spin their way out of everything.

    Jill
    --------

  13. Ember

    Ember Senior Member

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    Arguing against the ICC authors themselves seems self-defeating. Had the ICC document not explicitly stated, The Canadian Consensus Criteria were used as a starting point, but significant changes were made, then the CCC could be seen as a competing definition, and ME/CFS a competing name.
  14. Jill McLaughlin

    Jill McLaughlin *****

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    Ember, It is not arguing against the authors. I am saying that in general pple were
    saying there was an update of the CCC.
    This is an ME definition. I do not know if it would be called competing, it is different.
    If this was defined to be something called ME/CFS CCC, then that is what it is. However using
    ME/CFS or CFS/ME in general is meaningless. To HHS or the fed gov't, there is no such thing.
    So going on about ME/CFS research or testifying about ME/CFS is equally a waste of time
    and again diminishing the actual illness (ME). Again our pt groups either did not get this or care.


    ------

  15. Ember

    Ember Senior Member

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    I haven't seen anyone define the ICC to be something called ME/CFS CCC. Remember that neither the CCC nor the ICC is American-owned. Meaning transcends borders.

    "...the primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low-threshold of fatigability and symptom flare in response to exertion. This will enable like patients to be diagnosed and enrolled in research studies internationally under a case definition that is acceptable to physicians and researchers around the world."

    I hear your claim, but I see no evidence that ME advocates had an influence on the new criteria. I would think that the authors drew on their own knowledge of the field.
  16. Jill McLaughlin

    Jill McLaughlin *****

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    Cort, this cannot be reduced to grudges and forgiveness. It is about competence
    and trust. We support or trust based on actions. They do not deserve ours. He
    who does not remember the past will repeat it.

    This was done in spite of them and they worked against us. Now that it
    happened - anyway - oh they get it now? You were on that discussion group
    where several of us were literally I am sure kicked off. So no it is not that they
    were not aware of the issues. They actively chose to ignore it (and ban and
    censor and worse, probably all carefully orchestrated). We were not
    supposed to notice? And should now trust and want to work with them? It
    doesn't work that way. Those bridges have burned.

    So something happens - *in spite of their working against us - and then they
    support it. Or *say* they do. Big deal. This is not advocacy.


    ..........


  17. rlc

    rlc Senior Member

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    Hi Cort, I think its best that we just agree to disagree about the CAA, the important thing is to realise the amazing opportunity the CDC recognizing that ME is a separate disease is, and pouring all thought and energy into finding the most effective and fastest way for action to be taken about it, I do understand that the majority of people in the US will have been taken by surprise by the ICC, but its important to put these two new developments together and use it to our advantage so that people can be helped as soon as possible, after all this is what its all about finding ways to end peoples suffering!!!!!!

    Im certainly not coming from a ME centric point of view, Im coming from a common sense point of view, the scientific evidence shows that the people, who for so long have all been being told they have the same disease CFS, actually have different diseases, theres ME, and a vast number of people who have been misdiagnosed with CFS, that actually have other known diseases that are routinely being missed because of the woeful amount of testing recommended by the CFS definitions, and if there are any other as yet unidentified diseases in the CFS group the only way to find out is to get everybody else properly diagnosed so that they can then see who is left. So advocacy has to be based on these facts, getting them recognized, and action taken on them so that everyone can get their correct diagnosis, and cures. If these facts arent recognized and everyone continues to think that everyone has the same disease the research will never find a cure for the one disease because there isnt one disease, and everybody reading this will remain sick until the day they die.

    Again not wanting to dredge up the past or throw mud ,but the embracing of the Fukuda definition link http://www.cdc.gov/cfs/general/case_definition/complete.html was an absolute disaster, this is the definition created when the CDC and the Wessely school joined hands, and wiped all the evidence of a physical illness out of CFS, although the Holmes definition was absolutely not a ME definition, it was done to create a cover up for the ME epidemics that where happening at the time such as Tahoe and Lyndonville, at least it said it was a physical disease with swollen lymph nodes and raised temperature, and it did have a quite comprehensive list of testing to do, and other diseases that had to be ruled out, but it was basically just a chronic Epstein barr definition, in Fukuda the likes of Wessely, Sharpe and Hickie teamed up with the CDC and removed all the physical signs and greatly reduced the other diseases to rule out, and worst of all they included this.

    In clinical practice, no additional tests, including laboratory tests or neuroimaging studies, can be recommended for the specific purpose of diagnosing the chronic fatigue syndrome. Tests should be directed toward confirming or excluding other etiologic possibilities. Examples of specific tests that do not confirm or exclude the diagnosis of the chronic fatigue syndrome include serologic tests for Epstein-Barr virus, retroviruses, human herpesvirus 6, enteroviruses, and Candida albicans; tests of immunologic function, including cell population and function studies; and imaging studies, including magnetic resonance imaging scans and radionuclide scans (such as single-photon emission computed tomography and positron emission tomography) of the head.

    So much research had been done and was widely known about before this definition came out on the use of MRIs, SPECT, PET scans, and that Enteroviruses and EBV had been implicated as possible causes or co infection in the illness, and the changes in immunologic function and Fukuda banned all of them!!!

    The other very disappointing thing is the role of a certain Anthony Komaroff, he had also worked with the CDC on the Holmes definition, but in the years between these two definitions he went a bit feral on the CDC and did quite a lot of his own research such as these

    http://www.ncbi.nlm.nih.gov/pubmed/8141022

    http://www.ncbi.nlm.nih.gov/pubmed/8141020

    That clearly show that he was finding unusual SPECT and MRI results in his patients.

    Apparently when Reeves the leader of the CDC team that was covering up ME and trying to say that it was the mild illness that they portrayed in the Holmes definition, found out about this he went nuts at Komaroff!!

    Why on earth Komaroff decided to put his name to the Fukuda definition when it effectively banned all his work and says that its rubbish????????????????????

    Because things like MRI finding were well known in the patient community in the US, I do find it very disappointing that the likes of the CAA wanted to have anything to do with the Fukuda definition as it effectively banned all research into the condition and by taking away the physical signs found in the Holmes definition it left patient wife open to being labelled as mentally ill.

    In the interest of not wanting to be labelled a conspiracy theorist, the reason why my opinion is that the CDC invented CFS to cover up ME, is because the information that proves it is floating about in the darker recesses of the scientific information on the internet, a lot of it written by the CDC at the time!!!!

    The CDC have always claimed that they created CFS based on what happened at lake Tahoe, if you compare how Hyde describes what happened at Lake Tahoe and the videos with Chenney and the patients from Tahoe which are in my earlier post ,and compare it to the Holmes definition http://www.ncf-net.org/patents/pdf/Holmes_Definition.pdf which the CDC claim was based on Tahoe, its very obvious that the CDC is making up something that isnt what happened at Tahoe.

    One of the most damning pieces of information that shows that the CDC new that it was ME at Lake Tahoe and that they were extremely well informed about ME, and very well read on the scientific information, is provided by a certain Dr Donald A Henderson, Dr Henderson had worked for the CDC back in the 1950s and was sent to investigate the ME epidemic at Punta Gorda Florida

    See Epidemic Neuromyasthenia An Outbreak in Punta Gorda, Florida
    David C. Poskanzer, M.D., Donald A. Henderson, M.D., E. Charles Kunkle, M.D., Seymour S. Kalter, Ph.D., Walter B. Clement, M.D., and James O. Bond, M.D., M.P.H.
    N Engl J Med 1957; 257:356-364 August 22, 1957
    The New England Journal of Medicine
    http://www.nejm.org/doi/full/10.1056...95708222570802 (need to sign in)

    And wrote works such as this

    Epidemic Neuromyasthenia Clinical Syndrome?
    Donald A. Henderson, M.D., and Alexis Shelokov, M.D.
    N Engl J Med 1959; 260:757-764April 9, 1959
    The New England Journal of Medicine
    http://www.nejm.org/doi/full/10.1056...95904092601506 (need to sign in)

    He along with Dr Shelokov were responsible for coming up with the name most commonly used for ME in the US Epidemic Neuromyasthenia,
    Although he went on to work in other fields he continued to be involves in ME and regularly organized meeting with other ME experts from around the world, such as Ramsey Parish etc.
    DR Henderson really was an expert on ME

    In his article Reflections on Epidemic Neuromyasthenia http://cid.oxfordjournals.org/content/18/Supplement_1/S3.extract you find this rather stunning bit of information

    In the mid 1980s, newspaper accounts appeared of a mysterious epidemic on the California-Nevada border (lake Tahoe). The epidemic sounded suspiciously like those that we had investigated and reviewed. The investigators of the Centre for Disease Control (CDC Atlanta) alluded to certain other outbreaks with similar characteristics but made no reference to the epidemics of the 1950s. I suggested to colleagues at the CDC that the investigators might benefit from reading our 1959 review article in the New England Journal of Medicine (see Epidemic Neuromyasthenia- Clinical syndrome above) They had not seen it. As they said, WE did not know it was that long ago. In the literature search, we only went back to 1965.

    So Dr Henderson told the CDC it was ME and were to find the litrature So what was the litrature on ME that the CDC read. In this articlehttp://jama.ama-assn.org/content/257/17/2297.full.pdf the CDC invented version of what happened at Lake Tahoe, written by three of the CDC doctors Dr Gary P Holmes, Jonathan E Kaplan and Lawrence B Schonberger in 1987, who in the following year were to write the first CFS Holmes diagnostic criteria, based on the lack of scientific information in this document In which they claim that out of the 134 patients who instead of physically examining them, they interviewed them by phone! They found that only 15 patients had higher levels of Epstein Barr Virus, Cytomegalovirus, Herpes type 1 and 2 and measles. And that the reproducibility between the labs was poor, so that there was a concern weather the results were correct, and came to the conclusion that further work needed to be done! Which never was!

    According to Hillary Johnston and Dr Hyde the CDC doctors spent most of their time at Lake Tahoe playing Golf and going Hiking and had no interest in seeing the patients In the references you find what the CDC had read about ME and that they were extremely well informed on ME thanks to Dr Henderson pointing them in the right direction! They had read major works going all the way back to the first ever recorded ME outbreak in Los Angeles in 1934.

    The references are

    1. Sigurdsson B, Sigurjonsson J, SigurdssonJH, et al: A disease epidemic in Iceland simulating po- liomyelitis. Am J Hyg 1950;52:222-238.
    http://aje.oxfordjournals.org/content/52/2/222.long
    2.Sigurdsson B, Gudmundsson KR: Clinical findings six years after outbreak of Akureyri disease. Lancet 1956;1:766-767. http://www.sciencedirect.com/scienc...c2e3183bca9723306149c6ea53011607&searchtype=a
    3. White DN, Burtch RB: Iceland disease: New infection simulating acute anterior poliomyelitis. Neurology 1954;4:506-516. http://ovidsp.tx.ovid.com/sp-3.4.0b...4-195407000-00003&NEWS=N&CSC=Y&CHANNEL=PubMed
    4. Gilliam AG: Epidemiologic Study of Epidemic Diagnosed as Poliomyelitis, Occurring Among Personnel of Los Angeles County General Hospital During the Summer of 1934, bulletin 240. Washington, DC, US Public Health Service, Division of Infectious Diseases, Institute of Health, 1938, pp1-90.
    5. Galpine JF, Brady C: Benign myalgic encephalomyelitis. Lancet 1957;1:757-758.
    6. Shelokov A, Habel K, Verder E, et al: Epidemic neuromyasthenia: An outbreak of poliomyelitislike illness in student nurses. N Engl J Med 1957;257: 345-355. http://www.nejm.org/doi/full/10.1056/NEJM195708222570801
    7.Poskanzer DC, Henderson DA, Kunkle EC, et al: Epidemic neuromyasthenia: An outbreak in Punta Gorda, Florida. NEnglJ Med 1957;257:356\x=req-\364. http://www.nejm.org/doi/full/10.1056/NEJM195708222570802
    8. Dillon MJ, Marshall WC, Dudgeon JA, et al: Epidemic neuromyasthenia: Outbreak among nurses at a children's hospital. Br Med J 1974;1:301\x=req-\305.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1633383/pdf/brmedj02176-0019.pdf
    9.The Medical Staff of the Royal Free Hospital: An outbreak of encephalomyelitis in the Royal Free Hospital Group, London, in 1955. Br Med J 1957;2: 895-904. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962472/pdf/brmedj03125-0013.pdf

    If people take the time to read these articles it becomes very apparent that the CDC investigators new exactly what ME was. And there version of events at Tahoe are Fictitious.

    More Damning information is found In this article The chronic Mononucleosis syndrome http://jid.oxfordjournals.org/content/157/3/405.extract by Dr Stephen E Straus also one of the writers of the 1988 CDC Holmes definition,
    Amongst it you will find this

    Epidemic Neuromyasthenia
    In 1985, physicians in one medical practice serving incline village near Lake Tahoe, Nevada, noted a sharp increase in numbers of patients presenting with an ACUTE INFECTIOUS TYPE ILLNESS that was followed in many by chronic fatigue, myaligias, headache, feverishness and cognitive problems.

    And

    The features of this outbreak are most reminiscing of >30 similar ones described since 1934 (Los Angeles), each involving a few or nearly a thousand individuals. Most of the patients had been young to middle aged and highly educated; 70%-90% were female. As in Lake Tahoe, the majority recovered completely within a few weeks to months, but some had persistent fatigability that was said to be exasperated by physical and emotional stress. (exertional relapse)

    The onset of the illness in some of the Tahoe patients was associated with a modest atypicqal lymphocytosis, partial hypogammaglobulinemis or a high ratio of helper to surppressor lymphocytes ( so much for the CDC long held bullshit claims that ME patients dont fail any tests, they knew all this before they invented CFS)

    And

    One still perplexing feature of some of the patients in the Tahoe outbreak is the report that Magnetic imaging (MRI) demonstrated small foci of increased signal in the brain (P. Chenney, D. Peterson, A Komaroff, personal communications) These identified bright foci are similar to ones associated with multiple sclerosis, but the patients possessed none of the other physical or laboratory stigmata of that disease,

    The reference for Strauss document include

    1 Gilliam AG: Epidemiologic Study of Epidemic Diagnosed as Poliomyelitis, Occurring Among Personnel of Los Angeles County General Hospital During the Summer of 1934, bulletin 240. Washington, DC, US Public Health Service, Division of Infectious Diseases, Institute of Health, 1938, pp1-90
    2. Henderson DA, Shelokov A. Epidemic neuromyasthenia a clinical syndrome? N Engl J Med 1959;260:757-64
    http://www.nejm.org/doi/full/10.1056/NEJM195904092601506
    3, The Medical Staff of the Royal Free Hospital: An outbreak of encephalomyelitis in the Royal Free Hospital Group, London, in 1955. Br Med J 1957;2: 895-904. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962472/pdf/brmedj03125-0013.pdf
    4. The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia E.D. Acheson, D.M., M.R.C.P.
    http://www.meresearch.org.uk/information/keypubs/Acheson_AmJMed.pdf

    So as you can see you have five of the principle writers of the Holmes definition that invented CFS, Dr Gary P Holmes, Jonathan E Kaplan, Lawrence B Schonberger, Stephen E Straus, Antony Komaroff, and you can take it as read that Bill Reeves who was the head of this team and kept strong control of it, new all about this, new exactly what ME was, that it was ME at Tahoe, and had found a lot of failed tests in the Tahoe patients, and decided not to do anything about it and invented CFS to cover it all up.

    So sorry folks youve been on the receiving end of a elaborate scam by the CDC backed up by the Wessely school, who have also always known what ME is the referances for the Oxford criteria include these

    Henderson DA, Shelokov A. Epidemic neuromyasthenia a clinical syndrome? N Engl J Med 1959;260:757-64
    http://www.nejm.org/doi/full/10.1056/NEJM195904092601506
    Galpine JF, Brady C, Benign myalgic encephalomyelitis, Lancet 1957;1:757-8
    The medical staff of the Royal Free Hospital. An outbreak of encephalomyelitis in the Royal Free Hospital Group London, in 1955. BMJ 1957;2:895-904
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962472/pdf/brmedj03125-0013.pdf

    Instead of using all the material that the CDC collected to a launch proper scientific investigation of ME, they decided to sweep it under the carpet by inventing the far less serious sounding disease CFS with less serious symptoms and no indication that it could cause epidemics.

    The reasons why, are probably because according to Dr Hyde the business community at Tahoe got their congressman to put a lot of pressure on the CDC to cover it up, because Tahoes businesses relied on Tourism, which would have ended if word got out that a highly infectious crippling disease was infecting people in Tahoe.

    The CDC was also in the middle of completely mismanaging the emerging AIDS epidemic that was sweeping through the States at the time causing major panic amongst the population, and the thought of two unexplained epidemics at the same time was too much for them.

    And I would imagine the insurance company were putting pressure on as well, because the last thing they want is to be paying out for a large amount of people who a invalided for life.

    The only bright spot is that now that the CDC has finally officially recognized ME, when they come up with their own definition, they have for so long known so much about it might be really good.

    I would say that one of the reasons the CDC has changed its stance on ME and recognized it, is because they have realised that there is so much incriminating evidence like this floating round the internet that one day someone is going to put it all together and theyll find themselves having to deal with a multibillion dollar class action suit, now they can say that was all Reeves fault and we have got rid of him, and recognize ME now. Theres bound to be a lot more incriminating evidence on the net, because these idiots have been quite happy to sign their names to this information, however a lot of the articles you have to pay to assess and I cant afford it. If anyone with some spare cash is interested, if you look at the references of the known articles then do a Google scholar search for the articles in the references, you can usually find them.

    Regards It's true that anybody could have launched an attempt at an ME definition or bringing ME back into the spotlight. It took 2 people in Canada (Carruthers and Sande) to do that; the new definition truly is an example of the ability of two driven people striving to make a difference. Should the CAA or Meruk or Invest in ME or the other orgs have taken this on? Sure, in retrospect - you could argue yes. On the other hand there are many things that need to be done - all these organizations are small and overloaded and I'm just glad Carruthers and Sande did that.

    Agreed that Carruthers and Sande are to be congratulated and applauded for their efforts, and yes all the other orgs should have taken it on. But I do think people should also be applauding Dr Hyde, he has been way ahead of everyone on this for years and been largely ignored. I can see why the Orgs didnt back his research into ME, even though they should have, but Im completely baffled as to why nobody has ever support his work on how to get the right diagnosis for the misdiagnosed and the set of tests he has come up with to do this. If anyone is interested I have written out these tests that Hyde does here http://phoenixrising.me/forums/show...s-How-to-rule-out-all-other-possible-Diseases

    All the best
  18. rlc

    rlc Senior Member

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    Hi cort Re I think the new definition fits well with the descriptions of ME in its chronic phase as reported back then but you can make the case that the CDC was referring to one disorder - ME in the outbreaks and that the ICC refers to ME in its chronic phase. I think the CDC will have to come up with a new response to this 'new' ME.

    I think the main point that Im trying to get across is that the CDC has legitimized ME, so now the media can run articles on it and patients can demand research and funding for it just the same as any other group with any other illness can, this is something that has for so long been denied by the refusal of the government to acknowledge it, but the situation is now changed and people need to realise this and start taking action, whatever concerns people have about the different definitions can now to sorted out by scientists.

    I think there are very good reasons why there is some small discrepancies between the CDC statement and the ICC definition; its certainly not a case of them being different illnesses. First of all the CDC statement is a short paragraph, with very little detail!!! They say it has a case definition distinct from CFS, so we need to be demanding to see it before we can make any real comparisons! But the main point is that the CDC and therefore the US government now recognize ME, so people can now look into all these issues.

    The second thing is that the ICC is a consensus agreement, which is very much a vast improvement on all the CFS definitions. But it is just a starting point, once it is used to properly select a more homogenous patient group then they will be able to produce a document that has a lot more detail of other symptoms that are found in ME patients, but at the moment there focus has been solely on the defining symptoms that ME patients get, to help to get are more homogenous patient group so there is less chance of people being misdiagnosed as they have become aware that large numbers of people with different diseases have been all being lumped together.

    The ICC has side stepped the issue of the onset phase symptoms and just included a sentence saying it has an onset and chronic phase. This is understandable because its highly unlikely that any of them have ever seen patients in the onset phase, because ME has for so long been said not to exist and doctors are oblivious to it, what has been happening is that when patients are in the onset phase theyll see a doctor who will just tell them they have a bad Flu or a gastric bug or lung infection and are sent home, being told that theyll get better soon, then when they havent recovered in six months the doctors just stick a CFS label on them. So doctors like those writing the ICC only see patients in the chronic phase. I also think we can take it as read that the CDC who has always known what ME is, but have chosen to deny its existence, have also swept a fair few ME epidemics under the carpet since 1988.

    Whereas pre 1988 ME was recognized and epidemics were quickly recognized and intensely studied in the onset phase!
    So the ICC is left at the moment as a starting point, in trying to come up with the defining symptoms of the chronic phase. I do wish however that they would have referenced some of the old literature, and just included a sentence saying that the literature shows that ME has been responsible for a large number of large scale epidemics in the past. Because as it stands at the moment a doctor could have read the ICC, and be right in the middle of an ME epidemic and they would never even think that it could be ME because the ICC doesnt mention it can cause epidemics. The older literature on the epidemics also proves ME has to be infectious!!! But like a say its a good starting point and a vast improvement on the CFS definitions.

    Because of the lack of experience with onset ME patients if you compare the ICC with say the Chronic phase as explained in the Ramsey definition

    http://www.mecfsforums.com/wiki/Ramsay_definition
    1. Generalised or localised muscle fatigue after minimal exertion with prolonged recovery time.
    2. Neurological disturbance, especially of cognitive, autonomic and sensory functions, often accompanied by marked emotional lability and sleep reversal.
    3. Variable involvement of cardiac and other bodily systems.
    4. An extended relapsing course with a tendency to chronicity.
    5. Marked variability of symptoms both within and between episodes."
    Symptoms in chronic state
    Once the syndrome is fully established the patient presents a multiplicity of symptoms which can most conveniently be described in three groups.

    Muscle phenomena
    [Fatiguability]: Muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis. Without it I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME or mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise.
    [Pain:] In severe cases of ME, muscle spasms and twitchings are a prominent feature and give rise to swollen bands of tissue which are acutely tender. In less severe cases, muscle tenderness may not be so readily elicited but careful palpation of the trapezii and gastrocnemii (the muscle groups most commonly involved) with the tip of the forefinger should enable the examiner to detect minute foci or exquisite tenderness.
    [Clumsiness:] In the aftermath of the disease patients frequently fumble with relatively simple manoevres such as turning a key in a lock or taking the cork of a bottle.
    Circulatory impairment. Most cases of ME complain of
    Cold extremities and
    Hypersensitivity to climactic change . . .
    Ashen-grey facial pallor, some twenty or thirty minutes before the Patient complains of feeling ill
    Cerebral dysfunction (neurological)
    The cardinal features:
    Impairment of memory
    Impairment of powers of concentration and
    Emotional lability
    [Other] common deviations from normal cerebral function:
    Failure to recall recent or past events,
    Difficulty in completing a line of thought . . .
    Becoming tongue-tied in the middle of a sentence, and a
    Strong inclination to use wrong words, saying door when they mean table or hot when they mean cold . . .
    Complete inability to comprehend a paragraph even after re-reading it
    Bouts of uncontrollable weeping . . .
    Alterations of sleep rhythm or vivid dreams, or both . . .

    [Accompanying] features [that] can only be attributed to involvement of the Autonomic nervous system:
    Frequency of micturition (urination)
    Hyperacusis (hypersensitivity to noise)
    Episodic sweating
    Orthostatic tachycardia . . .

    Variability and fluctuation of both symptoms and physical findings in the course of a day is a constant feature in the clinical picture of myalgic encephalomyelitis.
    An alarming tendency to become chronic. [Added in the 2nd edition, 1988]

    You can see a lot of similarity between the two definitions Symptoms worsening after exertion, its relapsing course and that the major focus is on the neurological symptoms, obviously Ramseys is more detailed because he is describing the whole illness whereas the ICC is trying to focus on the defining symptoms.
    The mistake a lot of people make when reading the older literature is that they are not realizing that they are often talking about the onset symptoms found because the epidemics were being acknowledged and studied.

    So people see symptoms such as those laid out in the Ramsey definition which are onset symptoms found in the old literature

    Symptoms at onset

    They are similar to those described in the various recorded outbreaks. Thus it may be sudden and without apparent cause, as in cases where the first intimation of illness is an alarming attack of acute vertigo, but usually there is a history of infection of the upper respiratory tract or, occasionally, the gastrointestinal tract with nausea and/or vomiting.
    Instead of an uneventful recovery the patient is dogged by:
    Persistent and profound fatigue accompanied by a medley of symptoms such as
    Headache
    Giddiness
    Muscle pain, cramps, or twitchings
    Muscle tenderness and weakness
    Paraesthesiae [numbness or tingling in the extremeties]
    Frequency of micturition [urination]
    Blurred vision and/or diplopia [double vision]
    Hyperacusis [sensitivity to noise sometimes alternating with deafness or normal hearing]
    Tinnitus [constant sound in the ears], and a
    General sense of feeling awful.

    Some patients report the occurrence of fainting attacks relieved by a small meal or just eating a biscuit; these attacks were the result of hypoglycaemia
    All cases run a low-grade pyrexia (fever), seldom exceeding 100F (c. 38C) and usually subsiding within a week.
    A very thorough examination of the central nervous system should be made and this should be accompanied by a careful estimation of muscle power, especially in the limbs and neck. A search for enlarged lymph nodes should never be omitted. If muscle power is found to be satisfactory, a re-examination should be made after exercise; a walk of half a mile is sufficient, as very few ME cases can make more.

    People dont realize that they are talking about the onset and then get confused and think it must be a different disease, its not, its the same disease, but it is a disease with two phases those kinds of symptoms are found in the first phase, the ICC is for understandable reasons focusing on the second phase!!

    But with the CDC recognizing ME people are now free to start pushing for research into all of this to start happening immediately, there is nothing stopping people now, ME officially exists!!!!!

    All the best
  19. Jill McLaughlin

    Jill McLaughlin *****

    Messages:
    196
    Likes:
    5
    Ember, Well the concern is all over the place, knowing that the
    CAA has never supported ME and that the CAA (erroneously) says
    this is to replace CFS and that the CFSAC will be discussing the recommendations to
    change the name to ME/CFS. So it is a valid concern.

    ME advocates strongly advocated for this; unfortunately, many did
    it on their own due to attacks and hostility, so I would say that it
    had an effect beyond coincidence. And everyone gives the
    CAA credit whether it is deserved or not, so at least give them the
    benefit of the doubt.

    And a question for Cort: You said that CAA and Pandora strongly
    support the ME-ICC. But you also have said appear to or basically
    support it. I do like to be fair and objective and I have been out of
    commission due to the hurricane so perhaps I missed something.

    They have banned and censored ME advocates and we do not get
    any notifications, but the CAA's statement on their site (besides
    being erroneous) seemed rather banal and tentative and the
    Pandora site is the plethora of CFIDS and ME/CFS.

    Do you have something on which you based your assertions of
    their support?

    Thanks,

    Jill




  20. rlc

    rlc Senior Member

    Messages:
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    Likes:
    243
    Hi Cort, regarding the CAA sloppy statement that the ICC is calling for CFS to be renamed ME, when it is actually saying that ME patients are to be separated from the CFS group. Correct me if Im wrong but Im under the impression that you have lines of communication with the likes of the CAA, as you obviously have a correct assessment of what the ICC is saying, could you please contact the CAA and ask them to correct their error before it adds to the confusion!!

    Also as a large number of the ICC authors wrote the CCC, and are now saying that, they were wrong and that ME is ME and CFS is CFS, the term ME/CFS has been relegated to the history books and now has no medical validity whatsoever. Because of this I feel that it is really important to change the name of the PR site to Myalgic Encephalomyelitis and Chronic fatigue syndrome, and drop the ME/CFS, it would be a shame for people new to the site to be confused with this. And the term ME/CFS implies that ME and CFS are somehow related, and the only medical source left in the world that is saying that is the Wessely school and we dont want to be associated with their views in any way. It would be great to see the PR site taking a lead on issues like this!

    Returning to advocacy, another thought Ive had, is that the US is heading towards elections!! And it looks as if the results are going to be a lot closer than last time. I suggest that people in the US email the main parties and their candidate in the different states and let them know that the CDC recognizes that ME exists and is doing nothing about it and that a lot of people are being misdiagnosed with CFS because of the woeful testing that people are getting, and let them know that there are around 1 million people effected in the US and that they are connected by social media!!!! and if the party the politician represents doesnt publically promise to tackle these issues as a matter of extreme national importance. Then campaigns will be launched through social media to get everyone in the US affected with this condition and their families and Friends not to vote for that party!!!

    The politicians might not care about you, but they certainly do care about their Jobs!!! If a campaign is organized in the media along the same lines I have suggested previously, at the same time, this will create enormous pressure on the politicians to act!!! Obviously it may be difficult to organize 1 million people to vote a certain way, but the politicians dont know that, I would imagine that they wouldnt want to take the risk of calling are bluff. There is a very real opportunity to turn these problems into major election issues!!!!!!!

    All the best

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