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"Fatigue is not a disease" - Unger Responds, Advocates Launch Petition

Discussion in 'Phoenix Rising Articles' started by Mark, Jun 11, 2013.

  1. Firestormm

    Firestormm Guest

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    Absolutely bloody not and over my dead body! I am sure you can do this on your own and others can to. Just as anyone here can from any other 'expert'.

    I already bankrupt myself from pursuing 'expert' bloody 'help'. And I am not about to start giving free press to any more of these people.

    CLINICAL TRIALS! Where is Hyde's published work? All these patients he's seen - where are his figures? What's his treatment?

    Don't answer that. I really do not want to know. I have already read up on the man as can anyone else.

  2. Kina

    Kina Moderation Team Lead

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    Your initial statements are still incorrect related to the Canadian government.

    A doctor in Ontario can order tests that are not covered by OHIP, the patient gets billed directly. I know this to be true because my daughter has had tests that are not covered by OHIP. I also know this to be true because I worked within the Ontario health care system prior to becoming ill. What OHIP does is pay for tests they deem 'medically necessary', if you want other tests a doctor can order them and you or your insurance pays for them.

    Dr Bested was working out of the Woman's College Hospital in Toronto and was likely constrained by the rules/regulations set forth by the hospital -- many hospitals have their own labs. A doctor who runs their own personal clinic would have greater freedom to order tests from private labs of their choice whether OHIP approved or not because they are not constrained by the policies of hospitals and/or clinics.

    You could contact Dr Hyde or Dr Bested (she's in British Columbia now) or Health Canada or OHIP if you would like further information.

    Kina.

    It would be nice if we could actually discuss the topic of this thread which is Unger's response to the letter sent by NAAME.
    SOC likes this.
  3. snowathlete

    snowathlete

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    Really? WT* ?!?!
    Could you point to sources? Any of the ME/CFS orgs in the UK responding to that?
    SOC likes this.
  4. rlc

    rlc Senior Member

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    Hi Kina,

    You say

    But it seems to be the case that the OHIP does not deem that testing for all the conditions that cause the symptoms found oin CFS and ME is medically necessary. Which means, that patients are forced to get tests done by other means, which takes more time than it should! Which is what I meant when saying, that the tests that Dr Hyde does, could be done in a lot less time,

    I would like to point out that what I have been saying is very relevant to this topic I am pointing out the obvious flaws in the Letter to the DHHS, (which is what Dr Unger is replying to) i.e the CCC says that ME and CFS are the same, and pretending that it is an ME definition is not helpful!

    The Phoenix Rising teams opening post of this tread is misleading it has made people think that the Fatigue is not a disease statement, is in some way attributed to Dr Unger, which it isn’t, I would like to point out that neither the CDC or NIH or DHHS have ever said that Fatigue is a disease, in relation to CFS, they say that Fatigue is one of many symptoms of CFS, The fatigue is not a disease statement has nothing to do with the topic of this tread, so using the fatigue is not a disease statement to incite people to sign the petition could be seen in my opinion to be very misleading.

    Dr Ungers has replied, as one of the people the original letter was addressed to, was Dr. Thomas Frieden of the CDC. People may or may not like Dr Ungers reply, but the letter was sent to Secretary Sibelius, Dr. Howard Koh, Dr. Thomas Frieden and Dr. Francis Collins at the Department of Health and Human Services (DHHS).

    How about waiting for their replies, as they may be a lot more satisfactory, before using Dr Ungers reply to incite people to sign the petition, it would after all make more sense to wait until this information had been received, as it may be very positive, in which case everyone is wasting their time signing and talking about the petition. It may prove to be completely unnecessary.

    When the topic of this letter to the DHHS was raised on this Forum, others stated that they did not want people to just be against it, without putting forward some other positive suggestions, which is what I have done, which is leading to a discussion about these suggestions. Which many people are finding very informative!

    However what is not helpful is members of the Phoenix Rising board making suggestion that imply that people who are not in favor of this petition are some kind of insurgents trying to start a civil war.

    All the best
  5. snowathlete

    snowathlete

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    I agree that there are a lot of other topics being covered, but that's the whole value to an organization like PR. There are lots of topics and people can follow those they feel are most important. As with any topic on here that gets blogged about, if it's important, interesting, well-written and appropriately objective, then it gets more attention than less well-done posts. I'd have thought it would get some attention myself, but the proof would be in the pudding.

    For me, I saw certain topics not being covered as much as I felt they should be so I volunteered to write on them. Asking a group of volunteers who are already working themselves sick every day to go contact someone else and engage with them themselves, is naïve at best.
    Besides you clearly already know a lot about it, by the sounds of things, and feel it is so important, so who is better placed to do this than you? Also, a lot of people seem to be under the impression that people at PR work for them or something…people are un-paid volunteers, so is it really fair to complain that they don’t do more on topics that you deem more important than whatever they may be spending their time on? I don’t think it is.

    I don't agree that there is selective blindness going on from Mark and the PR board either. Quite the opposite actually. It's really tough to run PR particularly because it is objective and publishes a wide variety of views and has to cater for a large community with multiple views on things. What you seem to be asking them to do is the opposite of that - to contact one single group and get a list established by them and promote it, when that's not how PR can operate because it needs to be more balanced than that.

    Having a dig about the PR team telling you they are snowed under already, really isn't cool actually. It's oh so easy from outside to suggest that it's an excuse and make out that it's not true, but if you knew from actually being involved what the truth of things was and how bloody hard people work, you wouldn't say these things. It's really the worst. Seriously! Perhaps you just said it rashly, but I'd ask you to think about that a bit and consider apologizing about that cause it is really unfair and inconsiderate.

    There is already some provision of misdiagnosis information through some of the existing articles btw - see my zoonotics series for example, which is all about that really, so it's not like PR are avoiding the topic, or not promoting it. In fact, if I remember Mark’s earlier comment, they would love to cover this area more! You have an open invitation.

    If you truly think that it is a matter of life and death (and I see what you're getting at there, and agree to a point) then get involved in making the change you're talking about happen! You could write an article on this topic, including views from others to make sure you're presenting something objective (as you pointed out, no one wants to see selective blindness), give people references to further reading like Hyde's list and others if they exist. It would be a step toward what you seem to be saying you want - that's surely better than wasting time complaining that someone else isn't doing it.

    I mean, let me give you a concrete example: I wanted an article about Borrelia and Bartonella on here because I feel a portion of us have those things and don't know it. It was gnawing at me that a portion of us were living our lives in this misery when they could get tested for these things, find they have them and then get treatment and regain some or all of their lives. God knows that I wish someone else had written about it four years ago when I first got diagnosed and started looking on sites like this - maybe I would even be healthy now, who knows! But I didn't complain no one was telling people about it, I got on and did it myself, surrendering the limited time and energy I had to resolve the issue. I suggest that you do the same - as I said, I would look forward to reading such an article.
    SOC likes this.
  6. snowathlete

    snowathlete

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    All the interviews that I have done myself, I have just emailed them myself as a writer and asked for their input. They are always receptive to having stuff written about them. You can never guarentee that an article you write will be published, but you inform them of your intention to get it published wherever you are thinking of - though its often a good idea to check for interest first from wherever you want to publish your work.
  7. snowathlete

    snowathlete

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    My view, for what it's worth, is that checking for other misdiagnoses is a good strategy because a portion of patients do turn out to have other stuff. I try to focus on things that match my symptoms best (and specifically the more obscure ones that arent necesarily common in ME/CFS), that have treatment outcomes (there is some value to finding you have X, but if X has no treatment then there is a clear limit to the value you can gain from finding that out) and which are not too expensive to test for, or difficult/painful etc. Ultimately I think I would stop somewhere along the road, once I felt I had ruled out the most likely candidates and at least I would know that I had taken sensible steps and done my best to challenge the waste-basket diagnosis that ME/CFS often is.

    I especially hate the idea of not bothering to run the basic, fairly cheap and easy tests, for things like Borrelia, which though not perfect by any means, do come up positive in some patients, and then finding out ten, twenty, thirty years down the line, or maybe never, that I had Borrelia, but didn't check! :eek: ... In thirty years time if i turn out to have some more obscure, very rare disorder then I could live with having missed that.
    SOC likes this.
  8. alex3619

    alex3619 Senior Member

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    Hi rlc . This essentially happened to my CFS doc in 1993! He was running a lot of exclusinary tests, and we had gone part way through the process, when a massive fine was imposed on him for performing unnecessary tests. This was under the Holmes criteria though. It seems that CFS was a diagnosis of exclusion, but that exclusion is not permitted. This is bad medical management from the insurance industry and government. Since ME is continually conflated with CFS these problems apply to ME. Indeed I recently had my hospital rewrite my diagnosis from ME to CFS without even consulting me. Alex.
    taniaaust1 and snowathlete like this.
  9. alex3619

    alex3619 Senior Member

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    rlc , haemochromatosis at my iron levels is asymptomatic. Treatment is precautionary. I have been pushing for treatment for years because it will increase my oxidative stress, however small, and under guidelines for doctors in Austraia they cannot treat iron levels this low. My concern over treatment can be managed by proceeding cautiously, though again that may run into regulations as I may only be permitted treatment a limited number of times per year, I have not investigated this.

    I do agree we need to have things excluded, as many as possible. This is just good sense. Its also in violation of world-wide medical policy. The accountants are in charge, not scientists.
  10. Kina

    Kina Moderation Team Lead

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    There was absolutely no comment by me regarding what tests that OHIP deems medically necessary in the case of ME or CFS. You seem to be waffling over this issue and making up things about both the Canadian government and our OHIP system. As far as the time issue goes, many complex issues takes months to sort out even using tests totally approved by OHIP. Do you have any idea of the wait time in this Province for scans is, to see specialists, to even get an appointment with your doctor which last on average for less than 10 minutes due an extreme doctor shortage. In the city of 750,000 people that I live in 20,000 do not have a doctor and have to go to the walk-in clinic which is manned by one doctor who seems to lack even rudimentary knowledge of simple medical problems or they go to the Ambulatory Care Clinic in the hospital which is equipped to deal with acute health problems. There are very few doctors in the province taking on new patients. The waiting list is long and if you end up with a doctor you hate, you are screwed. The system is overloaded, money is short and all patients are getting a short-shrift not just ME patients. In light of this, most of Byron's Hydes suggestions regarding ME patients is frankly unrealistic.

    I am not going to respond to the rest your post because it's just going off-topic more.

    BTW -- I am not on the Board of Phoenix Rising. My activity is restricted to moderating the forums and forum organization so it's pointless to direct issues related to the Board at me.
  11. Nielk

    Nielk

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    Dr Unger states in her letter:



    ...other similar unexplained chronically fatiguing illnesses such as ME!!!!!!!!!

    She is saying there is CFS which is an unexplained fatiguing illness and then there is ME another unexplained fatiguing illness. I wish she would explain how they differ and how many people have been diagnosed in the US with this unexplained fatiguing ME illness???

  12. golden

    golden Senior Member

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    Been thinking. I dont think I can - just two seperate 'joe bloggs' have told me.
    Its disturbing isn't it!
    snowathlete likes this.
  13. rlc

    rlc Senior Member

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    Hi Gabby RE

    I think the most apropriate response to Dr Ungers reply, should be, Dr Unger as you very clearly in your reply state that ME and CFS are different conditions, why is there no government spending on ME, why has the CDC not provided the medical community with a definition of ME, and why has the CDC not made the medical community aware of ME or done any thing to stop its spread, this is an obvious breach of the CDC pledge to the American people see http://www.cdc.gov/about/organization/mission.htm which must be corrected imediatly.

    All the best
  14. biophile

    biophile Places I'd rather be.

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    I posted more from rlc's link to the CDC webpage:

    http://www.cdc.gov/about/organization/mission.htm

    -----

    Vision, Mission, Core Values, and Pledge

    CDC Vision for the 21st Century

    “Health Protection…Health Equity”

    CDC Mission

    Collaborating to create the expertise, information, and tools that people and communities need to protect their health – through health promotion, prevention of disease, injury and disability, and preparedness for new health threats.

    CDC seeks to accomplish its mission by working with partners throughout the nation and the world to

    • monitor health,
    • detect and investigate health problems,
    • conduct research to enhance prevention,
    • develop and advocate sound public health policies,
    • implement prevention strategies,
    • promote healthy behaviors,
    • foster safe and healthful environments,
    • provide leadership and training.

    Those functions are the backbone of CDC′s mission. Each of CDC′s component organizations undertakes these activities in conducting its specific programs. The steps needed to accomplish this mission are also based on scientific excellence, requiring well-trained public health practitioners and leaders dedicated to high standards of quality and ethical practice.

    CDC Core Values

    Accountability — As diligent stewards of public trust and public funds, we act decisively and compassionately in service to the people’s health. We ensure that our research and our services are based on sound science and meet real public needs to achieve our public health goals.

    Respect — We respect and understand our interdependence with all people, both inside the agency and throughout the world, treating them and their contributions with dignity and valuing individual and cultural diversity. We are committed to achieving a diverse workforce at all levels of the organization.

    Integrity — We are honest and ethical in all we do. We will do what we say. We prize scientific integrity and professional excellence.

    CDC Pledge

    CDC pledges to the American people:

    • To be a diligent steward of the funds entrusted to it.
    • To provide an environment for intellectual and personal growth and integrity.
    • To base all public health decisions on the highest quality scientific data, openly and objectively derived.
    • To place the benefits to society above the benefits to the institution.
    • To treat all persons with dignity, honesty, and respect.

    -----

    Much of the above information is a joke when reading about the CDC's sordid history with the Lake Tahoe outbreak of ME (which Reeves personally dismissed as "hysteria"), the questionable construction of CFS and the CDC sanctioned biopsychobabble that followed, wasting money on poorly conducted studies, the misappropriation of millions of dollars of funds allocated to CFS, etc. I realize the CFS division is just a small plaything for them compared to their other programs, but now whenever I hear about the CDC in the news or even in TV shows responding to some disease outbreak, I cringe at the idea of the CDC being the first line defense for anything.

    http://en.wikipedia.org/wiki/Peter_Principle
    Valentijn likes this.
  15. Nielk

    Nielk

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    Dr. Unger here seems to be putting CFS and ME on the same footing; she characterizes both as unexplained fatiguing diseases.
  16. Firestormm

    Firestormm Guest

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    Yeah I don't think we can read too much into that. I mean even Nightingale seem a tad 'cautious' in places or is that realistic?

  17. Nielk

    Nielk

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    The point I am trying to make is that if the CDC thinks that CFS and ME are interchangeable fatiguing illnesses as she states, why put up such a wall as far as changing the name from CFS to ME?
  18. Firestormm

    Firestormm Guest

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    OK. I am not sure she is - not specifically - it's all 'official-speak' is all. But I need to come back and re-read her letter Nielk cause I'm overdue a rest and in danger of not making much sense.
    Nielk likes this.
  19. rlc

    rlc Senior Member

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    Hi Alex, RE

    Yes it is certainly an appalling situation, it is in my opinion totally immoral to say that CFS is a diagnosis of exclusion and then effectively ban doctors from excluding diseases that cause the symptoms of CFS. Many people pets get more extensive testing from vets, then some people get before they are given a CFS diagnosis.

    It is a situation that I find completely abhorrent.

    RE

    Sorry I’m not sure of the details of how high your iron levels are, or what the guidelines for Doctors in Australia are. But I do know that any excess iron can have a potentially devastating effect on people’s health, it can accumulate in endocrine glands such as the pituitary gland and cause major problem. The Iron overload site that I put links to recently in the tread about Hemochromatosis that you were involved in, says that high levels of iron must be treated immediately as it will have nothing but a detrimental effect on the patients. Not sure on what the Australian recommendations are but I would imagine they are higher then the Iron overload site recommends?

    I

    In my opinion, it is also a violation of people’s basic human rights, and a Crime against humanity!

    All the best
    golden likes this.
  20. rlc

    rlc Senior Member

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    Hi Gabby, RE

    Dr Unger is saying

    “CFS and other similar medically unexplained chronically fatiguing illnesses such as ME, fibromyalgia syndrome, neurasthenia, multiple chemical sensitivities, and chronic mononucleosis.”

    She is not saying “that CFS and ME are interchangeable fatiguing illnesses”

    Similar does not mean they are the same or interchangeable

    She includes Chronic Mononucleosis here, sure it has similar symptoms to CFS, but it is a completely different disease with a known cause, Epstein Barr virus. If someone wanted to change the name Chronic Mononucleosis to ME, I would also be objecting to that, because it is not medically correct.

    The CDC has stated for many years on its website that ME and CFS are different diseases with different symptoms, it has had this statement on its website.

    “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.”

    Neurological and muscular signs makes it a completely different disease to CFS. As they say, “ME has a case definition distinct from that of CFS.”

    The point that I’m trying to make is that the CDC has publically made a pledge to the American people. This although I’m not certain of the intricacies of US law could more than likely to be considered a legally binding contract? Therefore if anyone in America, who cares about this issue is a lawyer, or if an individual or organization was to get a lawyer. Then the CDC could possibly be challenged on failing to take action about ME since the mid 1980s? It may be possible to file a class action lawsuit? This could possibly also include failing to provide correct information on how to exclude other disease that cause the same symptoms as CFS?

    Believe me I am not trying to be difficult about this issue; I have far better things to do with my time. But the fact that the US ICD codes recognize ME as a real disease that is distinct to CFS, is a massive advantage for ME patients in the US, they could possibly legally challenge the government on why nothing is being done about it!

    The problem for ME patients has been people saying that it is the same as CFS, and everyone being muddled together as one group called CFS, which has lead to all the money going to CFS research.

    Because the CCC says that CFS and ME are the same disease, and it is a definition of a fatiguing illness, not a neurological and muscular illness, it has a few ME symptoms in it, but it is basically a CFS definition. What is going to be achieved by just pretending that the CCC is a ME definition, is that instead of having all the ME and CFS patients muddled together and calling it CFS, we will just have all the ME and CFS patients muddled together and it will be called ME, So the problem of all the patients being muddled together will remain, all that will be achieved is that the label will have been changed.

    Because the plan is to get rid of CFS as well, all the advantages of having ME and CFS recognized in the US ICD codes as different diseases will be lost.

    ME and CFS are not from a medical stand point the same disease, the CCC says that they are, its own authors have said that the CCC is wrong and written a new definition that is just for ME the ICC, so this petition is arguing for us to ignore the views of the principle authors of the CCC.

    To my mind the problem is that all the ME and CFS patients and all the misdiagnosed people are all muddled together, changing the label on this problem is not going to solve the problem. If ME and CFS remain separate then people can campaign for something to be done about the officially recognized different disease ME, which may lead to some progress, having the same problem with a different label won’t.

    I do not have ME, I have the symptoms in the CCC but I do not have ME. If more research is done on ME it will not be of any benefit to me whatsoever. I’m doing this because I care about people and want to see the many thousands of people who are suffering terribly helped.

    I’m just stating that ME and CFS are recognized as different diseases, which is a good thing, because it can be used to stop all the patients being muddled together. I m also wanting more testing to find the misdiagnosed because this will help those people and will also greatly reduce the number of people all being muddled together with the wrong label.

    Changing the label will only keep all these people with different illnesses muddled together, which makes effective research impossible.

    All the best
    golden likes this.

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