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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Student Project: Medical Questionnaire, Volunteers are STILL Needed

Discussion in 'General ME/CFS News' started by linzi031088, Jan 2, 2010.

  1. Countrygirl

    Countrygirl Senior Member

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    Hello Miss Fabulous,

    Your above statement suggests that you haven't yet witnessed how severe M.E. can be. Many are hidden away for years, bedridden in darkened rooms, unable to care for themselves. Some need 24-hour care because they cannot even turn themselves over in bed. According to Dr Betty Dowsett, 10% die as a result of this illness, and M.E. is now certified as a cause of death. The death rate is not as high as in many cancers, I'm sure, but if the majority do not die from it, they certainly lose their lives. This condition has been referred to as 'the living death'. I also refer you to my previous post to Linzi.

    You say, quite rightly, that this illness does not cause people to become rude, abusive or impolite. Very sadly, however, many with this condition find that their doctors respond to them in just such a way. Fortunately, we have more than a few more enlightened members of the medical profession who dedicate a significant part of their careers to helping patients with this frequently devastating condition. It would be wonderful if you became one of them.

    Your English is fine.

    Best wishes,

    Countrygirl
     
  2. Martlet

    Martlet Senior Member

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    Absolutely! And with that in mind, I refer members to the forum rules. Particularly this part:

    Linzi, I am glad you are well and glad you are still interested in those who are still suffering. When you said that if you could get well, anyone could, I read your intention to be one of encouragement, to not give up hope.
     
  3. Martlet

    Martlet Senior Member

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    I found your reply to posts in this thread to be incredibly rude and sarcastic. You did not say whether you are an F1 or an F2, but in any case, you still have an awful lot to learn and the first lesson is how to treat patients with respect - even when they grumble and complain, as sick people are apt to do.
     
  4. Advocate

    Advocate Senior Member

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    I'd appreciate it if you'd comment on this statement (except for the "reckless speculation") that appeared on the ScienceNow Daily News website. It was written by a "guest," and includes some biology that I haven't seen elsewhere.

     
  5. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Let's remember, ME does not exist in US. That's right, while there may be two, possibly three illnesses in the UK: XAND, ME and CFS, we don't get ME. Whatever causes ME doesn't exist in US. ;-) So for survey purposes, if you want to include any of us in the US, you must include CFS. ;-) See, it is understandable that there would be that confusion. Seems many thought that XAND can't be in the UK.

    Ok, teasing aside, all of you in UK must realize that in the US, Me is CFS, as doctors diagnose us. Of course, some other illnesses may be diagnosed as CFS as well. But much more likely, many of us with true CFS or ME (that is the illness that was an outbreak in Incline Village) are being diagnosed with depression, because about half of our doctors don't believe CFS is a separate illness.

    It seems, about half the docs in the US even believes CFS, the illness in Incline, even exists. So we are given other labels. And, I never head of a main street doctor diagnosing as ME in the US.

    Whereas, in the UK, ME and CFS have been put together and both have been put into the psychiatric classification.

    Both UK and US have issues with putting an accurate definition with the labels. But the twisting and mislabeling are different in US than UK. In UK, ME has been given another label. In the US, we are given the CFS label or are misdiagnosed with depression. For doctors in US that believe CFS is a separate illness, not depression,the label CFS means an organic illness of unknown etiology. Many in US diagnose with CFS and know it isn't psychological.

    Miss Fab, thanks for engaging in the conversation. I hope you will look further. You must understand that many people with ME / CFS give up on traditional medicine, so the chance of seeing some of these very ill patients are reduced. Also, some can no longer work, so they can't access mainstream medical care any more. For this reason, studies as to the prevalence of an illness in an area does not use doctor reported figures, but goes straight to the population. You might look into the history of these type of surveys. The CDC made the mistake of first using doctor reported figures in knowing how many had CFS in the late 1980s and early 1990s. They had to change their method and then reported a tremendously higher figure. (And that has definition problems so that some question that figure. But all, including CDC, agree their first survey method through doctors was grossly inaccurately low.) So can you really judge the level of disability of ME / CFS patients on just what you see?

    Additionally, the nature of our illness is that we have good days and bad days, most of us. So if we have a doctors appointment coming up, we will likely save up for a few days ahead of time. Therefore, you may see us in a window of a few hours where we are at our best.

    If you look into the matter, you will see that studies show that about 25% of us recover, and are subject to getting sick again. You will find about 50% of us making improvement with life adjustments and medicine can have some function, often at about half their former lives. In my case, I can still work, but only part time and much of it us from home. I am in this 50%. But another 25% are home bound and bed bound. They are the forgotten, completely invisible. Likely a higher percentage of the people who post on this forum are in this group. They likely have given up or have moved on looking for a doctor who can help them. So if they saw you, they may have never returned, with no explanation. Maybe you thought they improved. But maybe they gave up on you. I believe CAA at one time put out these figures.

    Although I don't recall a US ME / CFS specialist saying it is as bad as cancer, I do remember that in 2007, in a press conference hosted by the CDC, doctors reported the disability is as bad as end stage renal failure and congestive heart disease. I have a step-father with congestive heart disease. And our energy levels are about the same. I think some comparisons have also been made to AIDS, as far as level of disability.

    As for the anger. I will agree that the ME / CFS group on discussion forums are a tough crowd. Seems it doesn't matter what anyone does, some get mad. Try to understand though what these people have gone through. They have lost much of their lives, some have even lost their families, due to the illness and the misunderstanding the public, even the medical professionals, have. They have spent money looking for help, but have instead been given anti-depression meds and told to exercise and they will get better. Doctor after doctor, disappointment and insult after insult. Even people aren't so sick gets frustrated with the health care system. How much more is the frustration for people who are chronically, severely ill and can't find a doctor who recognizes the nature of their illness, much less get treatment. At least with MS, there is recognition and a standard, tested, uncontroversial treatment plan. Not so for us.

    The sad thing is, that this very normal, healthy reaction to a tremendously difficult situation, some of which is caused by the lack of knowledge and bias in the medical professionals, leads to reactions that add fuel to the claims that we are all just neurotics. It is the irony that as many try so hard to be recognized, their behavior may just make many think they have a psychiatric problem. But I ask you, if you had lost your job due to a debilitating illness, had family scoff you and even leave you, and even your doctors, the many you have gone to, don't believe you have an organic illness, then how would you react?

    Tina
     
  6. linzi031088

    linzi031088 Guest

    Hi Tina,

    Just read you post. As you are aware, I do live in the UK and therefore our Healthcare system is different. To be fair though, every individual in the United Kingdom is entitled to free health care whether they are employed or unemployed which I think is fantastic. However, I'm not entirely sure whether to agree or disagree with ME / CFS being categorised into the Psyciatric category in the UK. I know that in 2006/7 it was termed by the Royal College of General Practitioners as a mental Health condition, but this didn't stand as you can imagine the uproar and the classification was revoked the same year. So there's arguments to back up and tear down the UK classification. One minute they term it as mental health, the next as physical. To be honest, until a cure or cause is found, I think it is unlikely a firm term will be decided, the best indication of how it is perceived is from the treatments offered and this varys from doctor to doctor.

    From the questionnaires coming back, there seems to be quite a few people being referred for Cognitive Behavioural Therapy, while others are solely treated as if their condition is purely physical, i.e. referrals to physiotherapists, medications etc. Although to be honest, I don't think i've come across more than 5 people who have found CBT useful...except for a coping strategy.

    Someone asked me earlier if I had gathered the required number or participants yet and unfortunately I haven't, so anyone still willing to take part I urge you to please send me a PM and I'll get the questionnaire sent to you ASAP.

    Linzi. :)
     
  7. Robin

    Robin Guest

    Usedtobeperkytina, that was a very thorough, well thought out post. I enjoyed reading it! I hope Miss Fabulous got a chance to read it, too.
     
  8. linzi031088

    linzi031088 Guest

    Hi Guys,

    Need to collect a lot of information and data this week in order to start processing it. I still need 100 more volunteers to take part in this study, so if you have any intrest in taking part please send me a PM.

    Thank you in advance !
     
  9. muffin

    muffin Senior Member

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    Miss Fabulous -- The User Name "Miss Fabulous" gives a hint of one's level of self-esteem. No other comment.
    Good luck ME sick with your doctors. I thought the US doctors were not so FAB...

    "The Queen's English" - We have a ton of CFIDS/ME folks from the UK here so the rest of us sick from around the world quite understand their form of English spelling. As an American, I lived in Bath, England for some time and mix up American and British English spelling often.

    Geeeeeez!!!
     
  10. linzi031088

    linzi031088 Guest

    Hey Sarah,

    Thank you for agreeing to take part in the study.

    Before I started the course I am on at the moment, I was doing a course called Health Studies. One of the topics was called "Physiological Disorders". Anyway, you got me thinking about it and part of that topic was to undertake two case studies. One was Diabetes, the other CFS / ME. When it is was first mentioned in the course I was a little shocked as I didn't think it would be brought into the education system. As the only one with CFS in the class, I was the "project" for the term.

    I think it's a good thing that this condition is now being highlighted, however, I'd like to say it was all positive, the the main aim was to debate whether the condition had a physical orign, or a stressful/mental health origin. Not sure whether to say it's a positive or negative thing to start debating this illness in the education system ........ ? ? ?
     
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

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    linz, as long as the published studies are included as evidence, why not debate it? The evidence is overwhelming. An honest look at the evidence without preconceived biases will draw the person to correct conclusion.

    What conclusion did you fellow students come to?

    Tina
     
  12. linzi031088

    linzi031088 Guest

    Hi Tina,

    The students on the course, were, like most other people, confused. It ended up with half the class believing it to be a mental health condition, with physical symptoms, while the other half believed it to be entirely physical........ It appeared pre conceived bias didn't make a difference unfortunately. Although, in fairness, their "minds" were made up from case studies, talking to a few individuals that suffered from CFS.

    O, BTW, someone mentioned on here, I think...please excuse me if I'm wrong...that "ME" didn't 'exist' in America ? Can anyone explain that further please ?
     
  13. linzi031088

    linzi031088 Guest

    Sorry Tina.

    Just double checked the post and it was yourself that had said that ME didn't exist in America. I'm just curious about that as I've had quite a few responses from American individuals in my study who use the term "ME" to label their condition.

    Linzi.
     
  14. linzi031088

    linzi031088 Guest

    Thank you to all those individuals who have given up a few mins to complete the questionnaire. I still require quite a few participants, so please get in contact with me if you would like to take part in the study.

    Linzi
     
  15. linzi031088

    linzi031088 Guest

    All the data from the answered questionnaires has now been loaded on data packages for analysing, I am aware many of you have already filled in a questionnaire, but as mentioned above, approximately 100 more volunteers are still needed. If you have any interest in taking part, or would like more information, please contact me ASAP.

    Linzi
     
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Someone correct me if I am wrong.

    ME existed in other parts of the world. But same illness (seemingly) also got other names: Royal Free Disease, etc., Post Polio Syndrome, etc. In all these cases, there were outbreaks in an area. And, the symptoms were very similar to what is now known in the US as CFS and in UK was known as ME.

    ME had particularly criteria.

    Now, if someone had those symptoms, but it was not part of an outbreak, in the US, they were diagnosed as neurasthenia.

    In Key West, Florida, an outbreak occurred in mid 1980s. It was called "atypical multiple sclerosis." The reason it is now considered possibly what is now called CFS is because the people who got sick had reactivated EB virus. Their symptoms were also similar to what is now called CFS or ME.

    So, UK had ME, a term often used. And US used neurosthenia or these other labels, or people misdiagnosed with depression or other mental illness, including hypochondria.

    Then there is the outbreak in Lake Tahoe. At the time, again mid 80s, it was thought to possibly be a new pathogen or an outbreak of a previously known pathogen. the two docs there has highly sophisticated medical equipment of the time and people there were rich. So many tests were performed. CDC came and checked it out. They did not associate it with neurosthenia (which was thought to not occur in outbreaks), or ME, or Royal Free Disease, etc. Why, I don't know. So understand, of the other outbreaks that got other names, there had not been such thorough testing.

    Since CDC thought it was new, they came up with a new name. They had decided the symptoms couldn't be caused by EB, so they dropped that name. And they couldn't find the cause, but by that time, it started appearing in other parts of the country. So they made up the name. Since they didn't know the cause, they labeled it on the most prominent symptom. At that time, they didn't know if it was virus or psychological or environmental. But the leaning at the CDC at the time was that it was likely psychological. That may explain why they didn't associate it as being ME. But they did look into other possible causes. (many think the CDC's further investigation was half-hearted at best, and heavily influenced by belief that it was psychological. I say it was bias but also arrogance and sexism.)

    Many doctors, though, particularly those who specialized in these patients, began to see similarities between the Tahoe disease (whatever name it is called) and other illnesses, ME, neurosthenia, Royal Free Disease and the others. So they began to think that maybe this wasn't a new illness. These started talking with each other, and with others in other countries. So that is when it was seen that the illness labeled CFS was actually same as ME.

    But, the government definitions were different. Illness was same, but definitions were different. The CDC definition left out some of the biological abnormalities the ME definition has. Absent the CDC declaring an organic disease, by default, the Tahoe illness (no matter the place it occurred) became a list of symptoms without a known cause. It ruled out people who developed cancer and other recognized illness. This presumption created a classification that included some people that didn't have the symptoms that are defined in the ME classification on the other side of the Atlantic. So even though the Tahoe illness was ME, the CDC created a new "illness" called CFS that included people that may have something totally different from what is called ME.

    But, the illness, the Tahoe illness, is the same. Since the new illness, called CFS, has no known cause and nothing biologically abnormal (according to CDC), it became associated with psychological illness. And the term became more popular and doctors in US were diagnosing people based on CDC definition. Some believed it was a new entity, whether it is psychological or organic. Others believed it was just another name for depression, so they would not diagnose someone with CFS, because there is no such separate illness, in their minds. So that is why I say, ME doesn't exist in US. The organic illness of ME as originally defined, was not used in US, that I know of. And since CFS was by default thought to be (undetermined, but the prominent thought) psychological, here in the US, by labels, we didn't have an illness like ME. Basically, the CDC thought the docs in Incline Village (outside of Tahoe) were quacks and the patients had mass hysteria or illness brought on by stress.

    And even in more recent years, for survey purposes, CDC has defined CFS even more broadly. So this includes a bunch of people who have fatigue with any of a number of causes. By watering down the definition, the true illness has been lumped in with a bunch of other people. Yet, given the cloud of confusion, doctors here are loath to diagnose someone with CFS, because it doesn't mean anything and there is not drug to fix it, unlike diabetes. So, only 15%, according to CDC, of the people in the US who have CFS actually carry the diagnosis. (given that they defined what CFS is and it may include many who don't have the Tahoe illness, that figure can not be trusted. Likely, of those who carry the Tahoe illness, more of them do carry the diagnosis. But since so many doctors don't even believe CFS is a separate illness, they are putting these patients into the depression diagnosis. So there are still many who have the Tahoe illness that don't have either a CFs or ME diagnosis.)

    After CFS became the US term, the UK started to see the association of the same illness. So they started saying ME is CFS. And since CFS is not known to have organic abnormalities, the understanding of ME shifted in UK.

    Since ME originally had a clear organic definition and listed as neurological, many people are rejecting the CFS label.They are making a distinction between the two, thinking ME is the Tahoe-like illness, whereas the CFS is the unknown, possibly psychological illness.

    So people are classifying themselves based on the original definition of ME. Even though doctors aren't making the distinction. They are trying to revive the clear organic definition of ME, because being told they have CFS creates a misunderstanding of the true nature of their illness. But doctors aren't making the distinction.

    In the autopsy of Sophia Mirza, the doctor declared she died of renal failure as a complication of chronic fatigue syndrome. Yet, he was a UK doctor. When asked why he said CFs instead of ME, even though he stated the spinal chord abnormalities, he said it is basically same illness, just CFS is now more known.

    Doctors consider them all the same. But patients are trying to make a distinction to rule out those who don't have the organic illness. It's hard to get the right name when there may be many people with similar symptoms but very different causes. The common thought now is to say there are "subsets" of the illness.

    This was long, but I hope it helps.

    Tina
     
  17. linzi031088

    linzi031088 Guest

    Hi All,

    Is there anyone else willing to take part in the Study ?

    Please send me a PM with your email address if you would like to participate.

    Linzi.
     
  18. linzi031088

    linzi031088 Guest

    Any other Volunteers ?
     
  19. _Kim_

    _Kim_ Guest

    Linzi,

    I changed the title of this thread - maybe that will alert some of the members who have not yet participated.

    Have you asked Andrea Whittemore if you could put a notice on her Facebook page about this?
     
  20. Frickly

    Frickly Senior Member

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    Just noticed this thread. I will do your study and will PM you now. I am in the United States and ME does not exist here. We are diagnosed with CFS. However, I think some may change our diagnosis to ME out of protest to the ridiculous name.
     

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