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Is it worth explaining the difference between ME and CFS to the public??

Discussion in 'Action Alerts and Advocacy' started by Tulip, Apr 9, 2011.

  1. Bob

    Bob

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    Yes, I'm pretty certain that Kerr has never used any historic ME definitions or the Nightingale definition, as a diagnostic criteria in any of his research.
    I'm not sure about Chia, but it's probably the same for him.
    So maybe their results are less impressive than they would have been using more specific diagnostic criteria than the CDC's criteria.
    I agree, it's good to keep that in mind when looking at their research.

    Judy Mikovits doesn't use historic definitions of ME either, but she uses her own specific selection criteria to make sure that her patients have a certain type of neurological or immune-related disease.
     
  2. insearchof

    insearchof Senior Member

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    Hi Bob

    I agree....the same caveat would apply to Chia's work.....even though he apparently distinguishes his patient bases as being entroviral infected ME patients and the remainder being non enteroviral CFS patients.
     
  3. Bob

    Bob

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  4. Boule de feu

    Boule de feu Senior Member

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    I can understand why Nielk is having this type of reaction to this thread because I had the same one a few pages down. This is why I chose to delete a "certain" thread. It was the same deleted thread ISO questioned. I wanted to avoid a confrontation. I knew someone would say something at one point. I knew it was coming. It had to.

    There were many allusions made throughout this discussion on the veracity of our illness (the U.S. and CCC gang). Some were very direct, others were more subtle. I did not appreciate them, either.

    Would we even dare say to the U.K. sufferers: M.E. is a psychiatric illness? Everyone thinks that, so it must be true. NO. We respect you too much to say such a thing and WE DON'T BELIEVE IT, either. It is unfortunate that some people got a hold of ME and turned it the way they did. I'm sure nobody would pass that kind of judgment on anyone here.
    Well, we feel the same way when you say that CFS is a wastebasket illness. It does affect us deeply.
    What we have and share is really real. It might not be historical ME, it might be a different disease altogether but it is a genuine illness called whatever.

    So, it does not matter if the comments are not directed at us. I was hurt by them but chose not to react.

    Could we be more careful when writing our posts and asks ourselves if we will hurt someone before posting them?

    I enjoy this thread (the short parts, anyway). I don't want it to end because of a divergence of opinions.

    I'm glad I finally got it out (200 posts LATER!). I hope I did not hurt anyone in the process.

    P.S. By the way, the problem is just that - what ISO mentioned - everyone who will only read parts of this thread will feel the same way I do. They won't understand what is going on and what the participants are trying to do. So be prepared to see more and more problems surfacing on this thread.
     
  5. Boule de feu

    Boule de feu Senior Member

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    I believe they choose to do the research on the more severe cases. Is that a fact?
     
  6. insearchof

    insearchof Senior Member

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    Hi Boule de feu

    I understand what you are saying and where you are coming from.

    I understand that although we are trying to have a factual academic type discussion, about medical definitions etc....that some will have a hard time divorcing themselves from applying the material here to their own personal circumstances and will therefore become upset. It's not easy to do that, I know....at least, when you just start to approach a topic like this one, that is asking you to consider another possibility, that might bring up personal concerns or fear.


    With regard to the CFS definitions, they have effectively been criticized for their breadth and ability to catch persons who should have been excluded from consideration of the diagnosis. Jason et al have been critical of the deficiencies in recent times too.

    To attack the definition and those responsible for it and maintaining it, is not an attack on or intended to diminish anyone who has this diagnosis.

    As I made mention to Bob a few posts back, no one is disputing those with the diagnosis are very ill...they are amongst the sickest of society and there will be many with a diagnosis of CFS who have ME or other severe illnesses that might have been over looked. Q

    I know of people who's doctors did not bother giving them a thorough medical work up and quickly issued this diagnosis and said..."I'm sorry, there is nothing more I can do for you."

    It's too easy for a busy, incompetent, ignorant or lazy GP to do this and of course, the guidelines justify these doctors not going beyond routine tests.

    Do not misunderstand me here. I am not saying that if you have a CFS diagnosis that your doctor was busy, incompetent, ignorant or lazy. All I am saying is that such doctors exist.
    You will know how thorough or otherwise your doctor was and if they were not or you are left in doubt, I would get a second or third opinion, if necessary, until you are satisfied.

    There are a few doctors here in Australia who say they don't believe in CFS. These doctors do not deny that their patients are very ill....they know they are. What these doctors are saying is, that they reject the breadth of the CFS diagnosis and the notion that if met with the signs and symptoms of CFS that they should simply stop at routine tests. These doctors are from the old school of medicine and or may have an interest in holistic medicine - they are interested inquiring minds like Dr Myhill in the UK by way of example. So, when a doctor says he does not believe in CFS, what he might be saying is, "I know you are ill, lets try and find the underlying cause or causes....we should not simply stop here."

    Similarly, on this thread...we are not saying people with CFS are not ill....we KNOW they are. We are saying, dont stop there..learn more, demand better assessments and re assessments of your existing diagnosis, because within CFS hides ME and possibly other illnesses that might be treatable and give symptom relief or even a cure.

    We are not posting this information to divide, or to make people feel bad or to prove a point. This is important information that individuals can use for health management and advocates can use, in the fight for change. But we will only succeed there if historical ME is given it's due recognition and the temptation resisted to merge it into CFS. If that is done, it will be, not only a powerful tool for personal and political change, but it will be the one, I believe, that will save the day. The truth and the answers lay in the past.

    The information presented is to inspire you and motivate you to dig deeper, ask more questions, demand better treatment and care, both from your doctors and most importantly from our governments.

    They are the ones who knew about ME and who allowed this and have continued to allow this to go on.

    We need to acknowledge, preserve and use the historical facts on historical ME and demand at the very minimum, that thorough investigative tests and testing be given to every CFS patient.....that they abolish the medieval requirement that they have placed upon doctors that stops them going beyond routine testing. Where else in medical science, do such draconian limitations apply?

    Learn about human rights laws and abuses....and come back and tell me that this isn't a very good and clear example of such.

    So whilst we might criticize the definitions, we are not suggesting that people are not very ill....or even that one group is more so. The term . "waste basket" applies to the outcome of the definitions application ....its consequences.....and should not be seen as saying anything negative at all, about those with a CFS diagnosis.

    All the same, I appreciate that people may find it upsetting and if I have used it in the past, I apologize for any unintentional offense caused, and if you think it will help matters I will not use the term in the future.

    Thanks for the feedback Boule De Feu, it was helpful.
     
  7. Boule de feu

    Boule de feu Senior Member

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    This message should be the first one on this thread

    Thank you for this, ISO.
    It's too bad this message is not the first one we read when starting this thread because it does alleviate a lot of the confusion about the intent of the discussion. Much of the frustration felt by some members could be (or could have been) avoided.

    Maybe Tuliip could incorporate the post #306 (or refer to it) in her first message? I don't know if it would change anything...
     
  8. Bob

    Bob

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    Yes, I agree that it might be a good idea to have an introduction to this thread, much like insearchof's very helpful recent post, so that people don't take anything personally, but understand that the information posted, and the opinions expressed, are purely academic.

    I already understand many of the perspectives that people have, and because I understand what angle people are coming from, I am able to interpret all of the posts in a neutral or positive way, and so I don't take anything personally.
    But I think that some posts may have been insensitively worded (something all of us do sometimes, esp when we feel passionate about a subject - i've also used unhelpful wording on this thread at times) which might upset other readers.

    insearchof, what do you think about copying and pasting your recent post (with small changes to it if appropriate) into your post #6 at the beginning of the thread, as an introduction to the thread? It's just a suggestion and you might not think it's appropriate. But it might be helpful for people who read the thread from the beginning.

    Or, as Boule suggested, maybe Tuliip could post a link to insearchof's post, or quote it, with a short note, in post #1, if you think that's appropriate Tuliip?

    If anyone wants to know how to edit a previous post, how to create a link to a specific post, or how to quote a post, then please ask.
     
  9. insearchof

    insearchof Senior Member

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    Hi Bob and Boule de feu

    I have no problems there regarding your suggestion with my post but I did use the term "we" liberally and so I should really put it to others who have been active on this thread ie Tuliip and RLC in particular, if they would like to add or clarify anything first and then will leave it up to Tuliip to decide, given that this is her thread.
     
  10. rlc

    rlc Senior Member

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    Hi everyone.

    I d just like to take the time to clear up a few things because there appears to be some misunderstandings about where Im coming from, and what Im trying to say.
    Firstly in no way Im I trying to imply that anyone is any more or less sick than anyone else! Quite the contrary Im trying to raise awareness that there are a lot of people at risk of dying because of the misunderstandings that have been created by the false information put out by the likes of the CDC and the Wessely school.

    The impression Im getting is that there is a belief that, there are three people writing in this tread who have ME as defined in the Ramsey and the Nightingale definition, who are trying to explain what ME is and that some people are getting upset and feeling that this is in some way demeaning their suffering.

    This is not the case, I do not have ME!! Or CFS, ME/CFS, CFS/ME CFIDS, IBS or Fibromyalgia; I am one of the Misdiagnosed!!!! Who has lost two decades of my life and been through an incredible amount of pain and suffering due to over 25 ignorant doctors, including several self proclaimed CFS expert doctors and the specialist ME CFS unit at a major Hospital, sticking these labels on me, while ignoring failed test results and symptoms, because they were too lazy to do their jobs properly, and instead stuck me with a ME/CFS/IBS/fibro waste basket diagnosis.

    The reason Im trying as best I can, to explain what ME is, and how the information has been deliberately suppressed. And there are major faults in all the CFS definitions including the CCC that are causing people to get misdiagnosed, (I have over 30 of the symptoms mentioned in the CCC including the 4 main qualifying criteria Fatigue, PEM, Sleep and pain). And that the CDC knew it was ME at Lake Tahoe and covered it up by creating CFS.

    Is because knowing this information helps people no matter what is actually wrong with them. And a lot of people if they take the time to read the information will see that their diagnosis is at best very questionable and what theyre being told by the likes if the CDC and Wessely School is nothing but a pack of lies. It is by researching these things that I have been able to overturn my previous false diagnosis and have a chance of hopefully getting some sort of life back. I would like other people to have this opportunity as well, and theres no way I can just get on with my life and not try and explain what I know to people. ME is a very different disease than what it has been portrayed as since the lies of the CDC and Wessely school started in 1988, because of this all research into ME has stopped, the people with it need help, they need the world to know what it is, so people will start looking for treatments for them.

    Everybody is being lied to on an epic scale by the people and that are claiming to help them, the amount of false information that is being deliberately put out and has been for decades is unbelievable.

    Because of the advent of the internet a lot of information is becoming available that was previously stuck in dusty achieves around the world, these archives are being digitized and people are spending a lot of time scanning the information and making it available on the net, and in the process articles that nobody ever thought the public would see are becoming freely available.

    Ill try and give a brief description of some of the things Ive found out which will hopefully help people see where Im coming from.

    CFS was, as Im sure most people know created by the CDC because of what happened at Lake Tahoe in 1984-1985. Sorry I dont have the time or energy to write this all up in full at the moment, but the CDCs own published writing from the time proves that it was ME as defined in all the old literature at Tahoe. The CDC knew that Dr Cheney had paid to get MRI scans for the patients at Tahoe and that these had showed liaisons similar to AIDS patients. The CDC knew this before they invented CFS in the Holmes definition and conveniently forgot to mention it.

    By the CDC own admission they read extensively the old literature on ME at the time of the Lake Tahoe epidemic and include it in the references in their 1987 investigation of the Lake Tahoe Epidemic written by Dr Holmes and several of the other writers of the 1988 Holmes definition that invented CFS.

    The material that they read showed that ME is highly contagious, had a sudden acute onset, had always caused major epidemics, often left people damaged for life, was so similar to Polio that it was often referred to in the past as Atypical Poliomyelitis, that it had a 4-7 day incubation period, that it caused extensive damage to the central nervous system and what all the symptoms were, that the infectious agent could be transferred from ME patients to Monkeys and that the Monkeys would then get very sick and extensive damage was then able to be found when the Monkeys were autopsied and that it had been shown that if people were to have a chance of recovery they needed to be confined to bed often for months after the initial infection had past.

    This information the CDC read, had extensive information on what kind of tests ME patients did and didnt pass, and that in a lot of the previous ME epidemics, they were then followed by an epidemic of Polio and the people that had previously been exposed to ME where immune to Polio. All of which they also conveniently forgot to mention in the Holmes CFS definition despite knowing all of this beforehand. And instead invented a disease with the symptoms that are basically those of a chronic EBV infection, and these symptoms have since been watered down in subsequent definitions into a set of symptoms that are indistinguishable from a large number of Psychiatric illnesses. More information on the frankly outrageous behaviour of the CDC at the time and the lies and deceit going on can be found here http://www.oslersweb.com/the_why___a_speech_in_london_86981.htm

    Im sure you will have noticed a lot of references being made to SPECT scans for diagnosing ME in this discussion. Some of the Pioneering work that was done on this that showed that the damage could be measured by SPECT scans, was done by one of the CDC doctors who not only helped write the original CDC Holmes definition but also the CDC Fukuda definition, his work was published in April 1994, the Fukuda definition which he helped write was published on 15 December 1994, and gives instructions not to do SPECT, MRI and PET scans and not to test for Enteroviruses! They have deliberately blocked people from being investigated by proven methods to diagnose the illness.

    Among the long list of CDC crimes is stealing millions of dollars of research money for the disease for years and using it as a slush fund to do whatever they wanted with, this went on for years until it was exposed by Hillary Johnson, writer of the book Oslers Web, this then lead to a full federal investigation and the CDC was found guilty, unfortunately William Reeves one of the CDC doctors involved and one of the leading exponents in the USA of the belief that CFS and ME are psychiatric diseases was helped to get protection under the whistle blowers act by the CAA who are supposed to be on our side, and have ensured that he is now in total charge of the CDC investigations into ME and CFS and is bringing GET and CBT into the US, and has written his own definition that has made it look so much like a psychiatric disorder that, research found 40% of people investigated with a CFS diagnosis were found to have major depression instead.

    Information about this can be found here http://www.oslersweb.com/newsletter.htm and here http://www.oslersweb.com/blog.htm?post=648635

    Everybodys favourite Psychiatrist Simon Wessely was contacting Dr Gary Holmes writer of the criteria that invented CFS in 1988 the same year it was invented, one of his letters can be found in the first link above, pushing the idea that its a psychiatric illness.

    In another 1989 article he admits to knowing about the Enteroviral connection and dismisses it and tries to imply that everyone with it has a psychiatric disorder.

    There are not one but two secret files that have been discovered in the UK, being kept secret for a length of time that is normally only reserved for documents that contain state secrets and information that could bring down governments.

    MRC files: Item reference FD 23/4553/1 (Records and correspondence covering the period 1988-1997) Closed for 73 years (ie.until January 2071): http://www.nationalarchives.gov.uk/...75665&CATLN=7&Highlight=&FullDetails=True&j=1

    DWP files: Piece reference BN 141/1 (Refer to "Medical Policy" on ME/CFS, covering the period from 1984 to 1993.) Closed for 78 years (ie. until January 2072) http://www.nationalarchives.gov.uk/catalogue/displaycataloguedetails.asp?CATLN=6&CATID=8897099

    There both being kept secret under the BS excuse that they contain peoples names and they dont want to breach peoples privacy, documents are released all over the world with peoples names and personal details blanked out its standard practice everywhere including the UK!!

    Personally I have very little doubt that they contain information on Wessely and co colluding with the CDC to make ME disappear and inventing CFS and portraying it as a psychiatric illness. Because the dates fit, Wessely was in contacted with the CDC at the time, ME has been obliterated from modern medicine and CFS suddenly appeared and is being portrayed as a Psychiatric illness. And to make matters worse their insisting that nobody with these diagnoses get extensively tested to find out whats really wrong with them, which in my opinion is being done for the sole reason that if people where extensively tested and found to be misdiagnosed with a large amount of different diseases, then their heads are going to be in the firing line!!

    My feeling is that the CDC and Wessely School have created a monster of a waste basket diagnosis which is catching vast numbers of people with a vast number of different illnesses in its net, ME included and this monster needs to be stopped!!!!

    In the recent UK NHS investigation found here http://www.rcpe.ac.uk/journal/issue/journal_40_4/newton.pdf they found 40% of people who had been diagnosed with CFS had been misdiagnosed. 40% of the estimated 20 million people diagnosed with CFS is 8 million people, this is the biggest medical scandal since Thalidomide!!!! Some of the people in this study were found to have diseases like cancer, hemochromatosis and cardiovascular diseases, these people would have died if they hadnt been discovered, and people are dying all over the world because of being misdiagnosed. To give an idea of what little effort they must of put in to find these misdiagnoses, The only way that they could have not found a single case of Vitamin D deficiency which causes the same symptoms as those attributed to CFS in Northern England where the weather is awful, (Ive lived there I know it first hand) is to not of tested anybody for it.

    Other doctors are putting in writing that they are taking the time to intensively investigate their ME/CFS patients and finding far higher misdiagnosis rates then 40%. And I must admit to wondering whats going on with all these so called expert CFS doctors around the world? Why arent they telling everyone about the large numbers of misdiagnosed people they find, if even the doctors from the famously useless NHS can do it. From my experience and from what Ive read about them what theyre doing is charging people obscene amounts of money, doing what Dr Hyde describes as the latest trendy tests e.g. testing for things like NK cell dysfunction, which is found in so many different diseases that its diagnostically useless, and all it tells you is your sick, which you knew before you paid for it, then charge a fortune for a vast array of different supplements etc that never cure anyone. Its a shame really because Dr Hyde reckons it costs about $10,000 at the absolute most for a patient to get every test and scan, SPECT, ultra sound etc to get everyone the correct diagnoses.

    I hope people can see what Im trying to say, that there is a large amount of information that is being deliberately suppressed and ignored by the powers that be. I want everyone to know this information because knowing it helps every one. At the moment every one with one of these diagnoses is in the same situation, up shit creek without a paddle! The only solution is to campaign to get things changed based on the true information, the ME people need to be looked at separately and work started to find treatment for them, all the misdiagnosed need to be diagnosed and treated, then and only then if there is anyone left that are suffering from some mysterious diseases that is unknown to science can they be identified and work begun to try and find whats going on. At the moment its being portrayed by the powers that be that everyone has the same disease, so all research is being done on groups of people with different illnesses and coming up with endlessly confusing results, which is just wasting what little money is available, and is a total waste of every bodies time.

    I hope that people can see that in no way am I trying to belittle anyones suffering or imply that one group of people are more sick then another. My aim is to try the best I can to provide information to help everyone involved, because youre all being lied to and mistreated in the most disgusting way, by people who are making large amounts of money out of your suffering. I read an article recently that said that what has been happening since 1988 can best be described as Genocide a view that Im in complete agreement with. The reason I keep banging on about misdiagnosis is because its not something thats happening just out in the rest of the world, its happening on this forum, at the end of my post #22 in this tread I have put a list of some of the vast number of failed tests that people have posted on this forum that shows that there are a lot of misdiagnosed people posting here, I want them to be helped, I know what its like to suffer needlessly for decades, its hell on earth and i dont want anybody else to go through it.

    Id like to conclude by saying that I view everybody here who gives what little energy they have to help other people and to campaign to try and make a change in this appalling situation that everyone is in, because of the lies and greed of others, with the greatest respect and admiration, all Im trying to do is share knowledge that I have gained over the years to give people a greater chance of success with their endeavours for the benefit of everyone involved!

    All the best
     
  11. Tulip

    Tulip Guest

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    Just thought i'd briefly go back to the original reason for this thread - my letter to the local paper. It came out tonight, they actually printed it and as an article which I requested :victory: but they cut out an important part about the CDC that explained why the name was changed (and left a big space where it was lol). So it doesn't quite make sense...grrr. I'm guessing that was for legal reasons :rolleyes:

    But i'm glad they printed it!.

    Hopefully it will make a few of the "oh i'm tired all the time too" people back off.
     
  12. Bob

    Bob

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    hi rlc,
    your posts have been extremely helpful and interesting for me personally, along with all the other discussions on this thread...
    i'm really grateful for everyone's contributions... this thread has stimulated me do something that i've been meaning to do for ages... to look into the history of the diagnostic criteria for ME... so i'm really grateful to everyone for pointing me in the right direction, and taking the time to share their knowledge...
    I think it's a difficult, contentious and complex subject to discuss, and with such a complex subject I think it's easy for people's intentions to sometimes be misinterpreted. Personally, I didn't think that you were being anything other than helpful, along with everyone else on this thread.
    Bob
     
  13. Bob

    Bob

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    Congratulations Tuliip! :thumbsup:
     
  14. insearchof

    insearchof Senior Member

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    Hi rlc

    Another powerful contribution from you. Thank you for sharing this. I think this should also be pinned at the start of the thread.

    Tuliip - well done. :thumbsup:

    Interesting that they cut out the CDC aspect of the article. If they were a small local paper, I can understand them doing that.

    But the day is fast approaching where this wont be necessary.:D
     
  15. floydguy

    floydguy Senior Member

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    RLC - I completely agree with you. I think I may have been misdiagnosed as well. I've been ill for about 8 years now and I don't think more then a total of 30 minutes of thought on the part of MDs has gone into my situation. CFS can be a wastebasket diagnosis and we should all insist on making sure the diagnosis is tightened up and not further loosened. It does not help anyone (except maybe the insurance and psych crowd) when people are misdiagnosed.
     
  16. insearchof

    insearchof Senior Member

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    What we need to demand is thorough medical testing for all persons with this diagnosis.

    I believe it is the CCC diagnosis that calls for a complete patient reassessment every 12 months.

    This should be done - and I mean - a complete re assessment as in a re consideration of the diagnosis.
     
  17. floydguy

    floydguy Senior Member

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    Perhaps but if the diagnostic criteria are suspect then I don't see how that does much good. But at this point the most knowledgeable doctors should be able to agree on the top 10 (or whatever) tests that should be run before a diagnosis is made.
     
  18. insearchof

    insearchof Senior Member

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    Hi Floydguy

    I agree. I would prefer to see the diagnostic criteria for CFS not used at all. Until that happens, at the very minimum - people with a CCC diagnostic could demand every 12 months, a complete re evaluation of their health - thorough testing ....for a complete diagnostic re assessment.

    The only problem I see here - is that if you are asking the doctor who made the initial diagnosis to do this - and the tests point to a missed diagnosis, they may be reluctant to explore it further, for medico legal reasons.

    The solution there, is to go to another doctor for the review.

    I dont think it is a good idea formulating any tests or their limiting their number. That does not seem to be a big improvement on the current situation of not going beyond standard tests

    Moreover, there is no other area of medicine that puts this stipulation on physicians when trying to find the cause of the patients illness. So why should it be so here?

    Patients in this forum could have multiple illnesses and some more than one. Each person is entitled to medical testing until such time, as the likely cause(s) has been thoroughly and completely investigated.
     
  19. floydguy

    floydguy Senior Member

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    Unfortunately, there are so few CFS related doctors that most don't have the luxury of finding another doctor. However, I think that people can force their doctor into being more accurate. For example, ensure that every symptom, word and test agree with the diagnosis. Coming from an engineering and finance background where everything is precise I find it intolerable when doctors toss out words such as "fatigue", "unrefreshing sleep", "malaise", "myalgia", etc. that are really completely meaningless but are used as the basis for making an awful diagnosis.

    I think it's also worth "forcing" a regular battery of tests to measure what's going on. For me it's the following:

    - NKC function
    - Cytokine levels
    - Coxsackie B Infection levels
    - EBV levels
    - TGF Beta
    - C4a
    - Vitamin D, Selenium, Magnesium, L-Carnitine, Vitamin C levels
    - Body temperature
    - Portable sleep study test
     
  20. rlc

    rlc Senior Member

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    Hi Tuliip, just like to say congratulations and well done for taking the time to right your letter!!!!! If it helps just one person then its well worth the time, and who knows who will read it, big things can start from small beginnings. Shame it got edited slightly, but at least the main part is out there for the world to see.

    Regarding the idea of copying some of the more recent posts and moving them to the start of the tread, to try and help with some of the confusion that seems to have inadvertently occurred. If you or anyone else feels it is appropriate, please feel free to copy and paste my last post, into any earlier post where it is felt appropriate for it to be.

    All the best
     

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