May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
Discuss the article on the Forums.

The Nightingale definition of ME - why was it never used?

Discussion in 'General ME/CFS Discussion' started by slysaint, Jan 12, 2017.

  1. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,463
    I've only just found out about the Nightingale definition of ME and it's diagnostic measures.

    Just wondering why it is not more widely recognised? I'm guessing it's because of the adoption of CFS; maybe it's time to bring it back to the fore and get the real ME researchers to at least consider it ?

    http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf

    The Nightingale Definition of Myalgic Encephalomyelitis (M.E.)
    Abstract
    M.E. is a clearly defined disease process.
    CFS by definition has always been a syndrome.
    It essential to define clearly Myalgic Encephalomyelitis. That is what the Nightingale definition of
    M.E. sets out to do. The definition is based upon two criteria: the excellent
    scientific work of respected physicians and scientists who investigated the various M.E. epidemics, and our modern scientific testing techniques and the knowledge resulting from examining thousands of M.E. patients
    using these techniques.

    Byron Marshall Hyde MD
    The Nightingale Research Foundation

    eta @Ben Howell @JaimeS input?
     
    Last edited: Jan 12, 2017
  2. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,463
    more passages from above
    "The Lack of Mention of Fatigue:
    M.E. is not
    CFS: Fatigue was never a major diagnostic criterion of
    M.E. Fatigue, loss of stamina, failure to recover
    rapidly following exposure to normal physical or
    intellectual stressors occur in most if not all
    progressive terminal diseases and in a very large
    number of chronic non-progressive or slowly
    progressive diseases. Fatigue and loss of stamina are
    simply indications that there is something wrong.
    They cannot be seriously measured, are generally
    subjective and do not assist us with the diagnosis of
    M.E. or CFS or for that matter any disease process."

    "
    All M.E. patients
    as well as all chronic illness patients deserve a
    systematic and total body investigation. No
    individual should go through life, ill, disabled
    without knowing why he is ill. Simply offering a
    label, whether M.E. or CFS, without looking at the
    pathophysiology that gives rise to these disorders,
    is both unacceptable and potentially dangerous
    both for the patient and the patient’s physician."
    "
    Depression, Anti-depressive Medications and
    M.E.:
    M.E. is not depression; M.E. is not hysteria;
    M.E. is not a conversion disorder nor is it a
    somatization disorder; M.E. is an acute onset diffuse
    injury of the brain. Psychiatrists should not ever be
    placed in charge of diagnosis and treatment of M.E.
    patients. It is simply not their area of expertise and
    their meddling has at times caused great harm to M.E.
    patients. Also, during the 20 years that I have
    investigated M.E. patients I have yet to see a single
    case of real M.E. that has responded to psychiatric
    pharmacological treatment such that the patient has
    recovered and been able to return to work or school.
    This topic is a very large subject and demands a
    separate publication and this is not the place for it.
    However I would like to note again the vascular and
    cardiac pathologies that one encounters in M.E.
    patients and how M.E. patients are often made worse
    by one antidepressive medication"

    "Graduated Exercise and the Myalgic
    Encephalomyelitis Patient:
    Possibly due to the fact
    that some Fibromyalgia patients can be improved by a
    gradual increase in exercise, or possibly due to the so
    called protestant ethic that all you have to do to get
    better is to take up your bed and walk, some
    physicians have extended the concept of passive or
    forceful increased exercise to Myalgic
    Encephalomyelitis patients.
    This is a common and
    potentially dangerous, even disastrous misconception.
    Doctors Jay Goldstein and Ismael Mena, using Zenon
    SPECT brain scans, demonstrated that the
    physiological brain function of an M.E. patient rapidly
    deteriorates after exercise."
     
    Pen2, Old Bones, mirshine and 7 others like this.
  3. joshualevy

    joshualevy Senior Member

    Messages:
    132
    Likes:
    155
    I think there are lots of reasons why it is not widely recognized. Here's a quick summary.

    Process Issues:
    * Modern disease definitions are almost always consensus documents with lots of supporters often overseen by one or more important medical groups. This is a single author document; overseen by one group few have heard off.
    * Modern disease definitions are part of the medical literature; they are published in peer-reviewed, indexed medical journals, and can be found on pubmed and elsewhere. I don't think this one meets any of those criteria.

    Substantive Issues:
    * This definition is wrong in many ways; it states as facts things that have very little research support and most doctors don't think are true. For example, there is little to no evidence that ME is infectious (at least not in the last 25 years). There is little to no evidence that ME impacts the vascular system (POTS rates are the same for ppl with and without ME, there is no vascular measurements which can diagnose ME or exclude it). ME's association with the immune system is unproven, and there are no consistent immune markers for the disease.

    But also, are you really sure you want to use this as a definition? Take a look at item #5:
    "If the patient’s illness is not measurable using a dedicated brain SPECT scan such as a Picker 3000 or equivalent, then the patient does not have M.E." Are you sure you want to buy into that? Because if you do, then if a doctor runs a SPECT, and nothing shows up, then you don't have ME. (Although, since he uses the term "measurable" maybe he is not requiring an abnormal scan? Of course, then the opposite problem occurs: everyone has a "measurable" scan.)

    Similarly, item #9 requires "one or more" of subitems a-j to be present, yet I suspect most people who currently are defined to have ME, don't have any of those particular symptoms. But the question remains the same, can you live with the negative side of the definition: if someone is tested for a-j and has none of them, then according to item #9, they don't have ME.

    Many of the rest of the items are so vague, they aren't really definitional. Take a look at item #6, for example. It's all subjective. There is no specific test, no levels for ME or not ME. It's just a list of symptoms that might or might not be there. Item 10-A is another great example of "blah blah blah" he doesn't say what ME patients have, or what non-ME patients don't have. There is some talk about "some ME patients have ..." and "few ME patients have ..." but nothing that defines a disease or says who has it, and who does not.

    In short, I don't think researchers would accept this definition; I don't think patients would, either; and I'm not sure it's even useful in terms of helping a doctor decide who has the disease and who does not.

    Joshua Levy
     
    Sea, Orla, Invisible Woman and 5 others like this.
  4. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,463
    thanks for the response; no I'm not saying I agree with/want it as a definition but there is a group of ME sufferers who do. I was really trying to promote discussion on it as a whole. I was also wondering if anyone had had any of the tests or knew of any trials/literature involving these tests.
    But really was curious as to why it appeared to have been 'buried'; and I still suspect that it was largely because it was going against the move (successful) to amalgamate M.E. with CFS. But I'm just guessing.
     
  5. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    This isn't really true, though they do err in focusing on POTS instead of orthostatic intolerance in general. But the study showing low incidence of POTS in ME patients was a methodological piece of crap. They pretty much excluded everyone with hypotension, from what I recall, among other issues.

    OI is much more common in ME patients, and that has been shown in many studies.
     
    Last edited: Feb 5, 2017
    Mel9, Webdog, merylg and 7 others like this.
  6. Shawn

    Shawn Senior Member

    Messages:
    214
    Likes:
    735
    Asia wide + UK
    Of course they know it's not depression or somatising they just don't want to admit it as they can't admit that they are not good enough to deal with a complex illness such as ME. Anti depressant is Latin for "we don't know what's wrong with you or we do and can't be bothered figuring it out fully so take this and bugger off"
     
  7. unto

    unto Senior Member

    Messages:
    148
    Likes:
    47
    This definition (although imperfect) and 'one that is closer to reality
     
  8. unto

    unto Senior Member

    Messages:
    148
    Likes:
    47
    Among the reasons why this definition was not successful I would put:
    Because it is not appreciated by the sick
    .....
    It is not acceptable to the sick
    because clearly indicates a viral origin
     
    Last edited: Jan 16, 2017
  9. Dechi

    Dechi Senior Member

    Messages:
    926
    Likes:
    1,692
    @slysaint I am currently a patient of Dr Hyde. I had the SPECT scan done in december, this is the test that would determine if I have ME without a doubt. I had to send a CD of my resukts in Chili for analysis and brain mapping by a respected colleague of Dr Hyde. Unfortunately my package seems stucks somewhere in Chile and hasn't reached Dr Neubauer yet so it will take a while before I have any answers...
     
    ScottTriGuy and slysaint like this.
  10. unto

    unto Senior Member

    Messages:
    148
    Likes:
    47
    It should be remembered that it was given the name CFS to "
    At the Obvious ME epidemics

    " in the US ...... then why they made that choice and 'intuibile
     
    Last edited: Jan 18, 2017
  11. unto

    unto Senior Member

    Messages:
    148
    Likes:
    47
    I do not think you can do "certain diagnosis" with Fukuda criteria ....

    But for decades they were considered valid by the majority of doctors and the majority of patients
     
    Last edited: Jan 18, 2017
  12. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,463
    have come across this site before but had not read it all.
    http://www.name-us.org/MECFSExplainPages/MECFS Explained.htm
    "
    ..M.E. experts from the U.K., U.S., Canada, Australia and many other countries who have studied this disease have stated that it's the definitions that determine the diagnosis. The current Consensus Document and most M.E. definitions (Ramsay, Dowsett and historic) require the major criteria of severe muscle fatigue following minimal exertion with prolonged recovery time, and neurological disturbances, especially autonomic, cognitive and sensory functions, and variable involvement of cardiac and other systems, with a prolonged relapsing course. This is a very specific list of criteria, and a major point to note is that the CNS (central nervous system) dysfunction of M.E. can be measured. (See below.)
    Alternately, CFS definitions present the major criterion of fatigue that lasts 6 months and reduces the level of function by at least 50%. Post-exertional malaise and neurological abnormalities are considered minor and optional criteria. So this broad definition could encompass any of many illnesses in which fatigue plays a role. Fatigue is not only a symptom of numerous illnesses, but it is something experienced by normal, healthy people. And there are no reliable objective ways to measure fatigue."

    "
    "...there's one myth left that needs removing. The phrase, "...the chronic
    fatigue syndrome, myalgic encephalomyelitis ... " appears to assume that M.E. is a subset of a number of illnesses, sharing chronic fatigue as a principal symptom, assembled together under the so-called umbrella term Chronic Fatigue
    Syndrome. Indeed, many commentators routinely use M.E. and CFS synonymously
    and interchangeably. M.E. is neither of these things but a discrete
    neurological illness.

    The overwhelming exhaustive experience of M.E., disproportionate to energy expended, is qualitatively and quantitatively different from fatigue as
    normally experienced and it is not refreshed by any amount of sleep. In
    addition, there is a range of symptoms, including muscle pain and cognitive
    dysfunction, not present in mere tiredness.

    Persisting using the word "fatigue", which is not a very useful symptom to try to single out any particular illness (because which illness does not have
    fatigue associated with it?), is holding back research into the physical cause
    of M.E. by bundling different illnesses together, confounding variables and diluting the reliability of the findings for M.E. sufferers.

    I am far from the only person in the global M.E. community appealing for us all to stop using the "F" word. Dr. John Greensmith


    Dr. John Greensmith further explains: “M.E. is recognised by the World Health Organisation as a neurological illness, for which the physical cause is as yet unknown and is categorised differently from Chronic Fatigue Syndrome. Bundling them [fatiguing illnesses] all together weakens any research experimental design, dilutes and distorts the findings, making it difficult, if not impossible, to generalise to any one particular illness and, therefore, hampers progress towards finding an appropriate treatment or cure for every one of them, packaged under the controversial umbrella term CFS, not just M.E."
     
    Last edited: Feb 5, 2017
    Pen2 and Dechi like this.
  13. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,463
    Interesting lecture given by Dr Hyde in 2012:
    https://www.masscfids.org/more-reso...yron-hyde-2012-fall-lecture-summary?showall=1

    "“Why Doctors Can’t Diagnose and What Tests Should be Considered” was the title of the lecture by Dr. Byron Hyde"
    "A stroke patient can exhibit similar symptoms to the ME/CFS patient in the area of aphasia (word finding difficulty and speech difficulty) and dysphasia. Dr. Hyde does not see much difference between stroke and ME/CFS patients with regard to diffuse brain injury."

    "
    Pseudo-Diagnoses are non-scientifically-testable diagnoses
    In explaining what he meant by pseudo-diagnosis, including anything with the word “syndrome” or “disorder” after the name, Dr. Hyde said that the following syndromes are diagnosed on symptoms alone without any available diagnostic laboratory tests:

    • CFS, CFIDS
    • Fibromyalgia
    • IBS (Irritable bowel syndrome)
    • Non-major depression
    • Anxiety-neurosis
    • Hysteria, conversion or somatization disorder
    His analogy was akin to having a headache but not knowing if it was caused by a migraine, brain cancer, or perhaps an injury to the neck, but the only thing the headache did was indicate something was wrong and should be evaluated. He emphasized that anything with the name “syndrome” or “disorder” means it is something that should be looked into."
     
    belize44 and sarah darwins like this.
  14. Chrisb

    Chrisb Senior Member

    Messages:
    1,051
    Likes:
    5,358
    It must be remembered that on the committee determining the definition of CFS in 1988 there was consensus but only after the only two people with knowledge of ME were ignored.
     
    slysaint and sarah darwins like this.
  15. belize44

    belize44 Senior Member

    Messages:
    923
    Likes:
    2,172
    Pennsylvania
    I have long believed this, and feel that many doctors today are only interested in lab tests. Lab tests are good in a way but when they come back normal, the buck stops there and no further diagnostic work is done, so we all suffer.
     
    Pen2 likes this.
  16. Orla

    Orla Senior Member

    Messages:
    706
    Likes:
    1,454
    Ireland
    I read through this definition and piece of writing a few years ago and saw some problems with it, the main one being that it promoted graded exercise [Edit: I found the part which I have quoted in another post below. It is not quite GET he is pushing but it is not great, and in the wrong hands would be pounced on to push exercise]. I don't know if he has since removed this part on exercise from his website (it contradicted other parts of it, but it was definitely in there. Any doctor could have latched on to that bit if they wanted to).

    I was a patient of Dr Hyde's over 10 years ago (it was a bad experience but that is a whole other thread). Surprisingly my SPECT was read as normal. This is what I was told. I did not receive a copy of the scan so wasn't able to check with anyone else whether they would read it this way. He talks up the quality of the SPECT scans he gets done but someone else told me he didn't think they were the best quality.

    Anyway my blood flow to my brain was read as normal, but to be honest I was left wondering then what explains the brain-fog, memory and concentration problems? I also have POTS and feel the concentration problems a lot worse if I stand. I can concentration the best when lying down, though still nothing like normal levels.

    He told me I didn't have concentration problems, I just thought I did! [He knew I wasn't one to make up symptoms, as he kept giving out to me for being "too honest" about my symptoms. Unfortunately this didn't stop him from basically telling me I was imagining I had concentration problems :confused:]. I presume his attitude was based on having a normal SPECT Scan result.

    So be careful what you ask for, as if it is assumed that anyone with ME, or with concentration problems, will have an abnormal SPECT Scan result, and they have a normal result, what do you do then? You would be left for no explanation of the symptoms. I don't know if the scan was done on a different day if the test would be abnormal, but any test that would vary that much from day to day couldn't really be used as diagnostic.

    I don't have any doubt that I have classic ME, even though I would prefer another explanation for my symptoms, (preferably something treatable ;) . I was hoping he would find something else treatable but he didn't (or if he did he didn't tell me!).

    I wrote out something ages ago on what I thought about his exercise comments but I don't have it this computer. I will have a look again at the definition to see if I can find what I remember. I did find it odd to see the hardcore ME- is not CFS - activists promoting this definition, but selectively ignoring the comments contained within the document promoting graded exercise.

    Edit: I meant to say that I had low circulating blood volume. I think that test was done on the same day as the SPECT Scan result.
     
    Last edited: May 24, 2017
  17. Dechi

    Dechi Senior Member

    Messages:
    926
    Likes:
    1,692
    @Orla I am sorry you didn't have the best experience with Dr Hyde.

    I am a patient of his. I haven't read where in his definition he talks about graded exercise, but I am very surprised and doubt that it's still included, in fact I know it's not. I had the discussion with him about exercising and I know for a fact he would never, ever prescribe any ME patient graded exercise. On the contrary, he would firmly advise against it. This must be a very, very old version.

    As for SpECT scans, I know he was having problems getting them done in Canada because there were no machines anymore to do them. They are old technology and hospitals are getting rid of them and the new technology doesn't work for this purpose.

    He just recently started doing them again and I had mine done and the quality of it is excellent. It was sent for analysis in Chile, in nuclear medicine. I think maybe your spect scan was done with inferior quality techniques, maybe just before he stopped doing them. Anyways, mine definitely showed hypoperfusion and proved I had ME.
     
    slysaint and Orla like this.
  18. Orla

    Orla Senior Member

    Messages:
    706
    Likes:
    1,454
    Ireland
    The Thyroid cancer stuff is wrong, apparently. This has been pointed out to him by other doctors but he doesn't listen to them apparently.

    I think where he goes wrong is that he is comparing actively seeking out and testing ME patients for cancerous thyroid nodules, with a rates of diagnosed Thyroid cancer in the population in general. But if you examine people who died from other causes the cancerous nodules they have would be much greater than that diagnosed in the population in general.

    So the rate of "cancerous" nodules in the thyroid of ME patients isn't necessarily greater than in the general population, if you actually screened the general population in the same way as the ME patients.

    He might be getting cancer diagnosed in patients in ME who might not have ever suffered any problems from this "cancer". Sometimes abnormal/cancerous cells disappear. Also I think that there was some sort of thyroid abnormality being formerly diagnosed as cancer but which has now been "downgraded" from cancer (this would be in the last few years).

    Gilbert Welch has some good pieces and talks on this issue (not to do with ME).



    H. Gilbert Welch: Overdiagnosed - Making People Sick in the Pursuit of Health
    (I haven't watched this in a while and can't remember if he discusses the thyroid one in this one but he discusses problems with screenings)

    Korea's Thyroid-Cancer “Epidemic” — Screening and Overdiagnosis
    http://www.nejm.org/doi/full/10.1056/NEJMp1409841
     
  19. Dechi

    Dechi Senior Member

    Messages:
    926
    Likes:
    1,692
    @Orca I don't know his position about cancer or thyroid problems but one thing is for sure, the way he works is by sending his patients to the best specialists in the world, so I would think anyone diagnosed for cancer under his care would have gotten the diagnosis from a specialist.
     
  20. Orla

    Orla Senior Member

    Messages:
    706
    Likes:
    1,454
    Ireland
    Hi @Dechi, the version I originally read was less than 10 years ago as it was after I had been to him, so not that long ago.

    It was Byron Hyde that sent me for the SPECT Scan that he was claiming at the time was good quality, and that he was saying was diagnostic. But yeah, there would be a problem getting a SPECT scan in a lot of places so not realistic I think to have it as a requirement for diagnosis. But I think it could be useful to show a problem for an individual (e.g useful as an objective test for work or whatever to show there is a problem).

    These are some comments on exercise I would object to in the definition [not just the exercise, the assumption that patients will reach a fairly stable plateau. I'm only skim reading the definition now but I know this is what he used to think, but it might not be pushed so much in this definition]:

    "Once the patient reaches a plateau, or starts to improve, lack of activity will eventually make the patient worse. Depending upon the degree of physiological brain dysfunction, patients should start to increase stressors slowly even if this means a temporary setback. This is neither an easy nor a fast process and again, depending upon the degree of brain dysfunction, may take years until the patient can resume a relatively normal life activity. (3) If the M.E. patient conforms to the guidelines set out in this definition, the insurance company can only make the patient worse by instituting progressive aggressive forced physical and intellectual activity. M.E. is a variable but always, serious diffuse brain injury and permanent damage can be done to the M.E. patient by non-judicious pseudotreatment." [my emphasis]

    In fairness he is against a very rigourous exercise programme but some of the other comments are worrying. I know he has this idea that patients go through fairly definite phases of acute, stable and then recovery, which colours I think what he says here and elsewhere. I've put a few of his comments below in quotes and then say what I think is wrong with them.

    "Once the patient reaches a plateau, or starts to improve, lack of activity will eventually make the patient worse"

    I my experience when patients start to feel better they naturally increase their activity levels. I've only ever heard of one patient, out of thousands, that may have been over-resting (they still had ME after they stopped doing this though). So I am not convinced that voluntary lack of activity will make 99.9999% of patients worse in practice. If the lack of activity is not voluntary there is no point in worrying the patient about the risks which they can do nothing about, or potentially putting pressure on them to try to do more, as the vast majority already do as much as they can.

    "Depending upon the degree of physiological brain dysfunction, patients should start to increase stressors slowly even if this means a temporary setback" [my emphasis]

    If an activity makes a symptom worse is it a good idea to push through? A person could increase gradually within their limits if they started to feel better. If they feel worse they need to step down the activity a bit, normally.

    "This is neither an easy nor a fast process and again, depending upon the degree of brain dysfunction, may take years until the patient can resume a relatively normal life activity."

    This is a bit optimistic for most patients. It could give the impression that you can gradually increase activities to normal levels.
     
    justy likes this.

See more popular forum discussions.

Share This Page