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New Dr Byron Hyde ME Definition

Discussion in 'General ME/CFS News' started by rlc, Nov 6, 2011.

  1. rlc

    rlc Senior Member

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    Hi not sure if this has been posted before, its the new ME definition presented by Dr Hyde at IACFS/ME conference, which is in my opinion a lot better then the ICC definition because it is testable, and more clearly seperates the ME patient group from the CFS group it can be read in full here http://www.hfme.org/Other/DefinitionBooklet_Sept_2011.pdf

    All the best
     
  2. Sing

    Sing Senior Member

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    Thanks, heapsreal, for expressing some of my questions too. In general, I don't think all the science is there yet to make absolute distinctions between ME and so-called CFS patients. I say so called, because Dr. Hyde has a great paper/speech on why "CFS" is a nonsensical diagnosis (see www.nightingale.ca ), and he means the CFS of those vague definitions from the CDC, in particular. He has great arguments against a foolish definition, but that doesn't mean that a lot of people who get this label don't have what he would term, ME. So, I think we are still in a process, and for me, the new ICC definition is better than the last Canadian Consensus Definition, and right now the best one we have to go on with, for diagnosis and research purposes as well as focal areas for treatment.
     
  3. *GG*

    *GG* Senior Member

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  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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  5. liquid sky

    liquid sky Senior Member

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    It sounds like Dr. Hyde is very familiar with ME. I don't think that he necessarily excludes those who have received a diagnosis of CFS. He just recommends more testing to rule ME in or out. Getting all that testing is the difficulty for most patients.

    It was interesting that he continues to believe ME is caused by entero viruses, some not yet diagnosed. He also speaks highly of Dr. Chia. I would love to be able to be evaluated by Dr. Hyde, but finances rule it out.
     
  6. taniaaust1

    taniaaust1

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    Thou in the past I wouldnt have agreed with this, I nowdays have to say that I agree with what heapsreal is saying here and that many with "cfs" and even mild cfs... may in fact be ME patients too, thou I do think we do need to separate out those who have this milder or those who may not have it from the very sick patient group when it comes to studies etc which should and need to be focused separately on the very ill group rather then mixing the groups in studies.

    I say this as I have what appears to be ME, my cousin has what appears to be ME but my sister and another cousin (same side of family as the other cousin with ME) has what looks to be CFS and not how people describe ME. Neither of those would get a ME diagnoses. It would just be too coincidental if both ME AND CFS are running in my family, on the same side of it and not some how connected.

    My two other sisters who dont have what one could say CFS, have had strange problems too (so all of us 4 of us sisters have unusual things going on). One was recently sick with an "unknown virus" for over a month which the doctors couldnt work out and so sick she felt like she was going to die for that time, but has recently recovered from whatever it was....fingers crossed it dont happen again to her), while my other sister has had a strange chronic cough for years which dont seem to be stress related or asthma and she doesnt smoke but she has no other symptoms. (my other sister who could get a CFS diagnoses, she also coughs, so do i at times with the ME).

    So to me.. it really does look like something is going on in families which can manifest to completely different degrees in people. That leaves one to wonder why some are getting this but never get very sick, while others get very very sick with it long term.
     
  7. rlc

    rlc Senior Member

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    Hi GG, the link youve posted is for his older definition, the newer one can be read at the link I posted above; the tiger pic is in both.

    The good thing about the Hyde definition is that it is testable, whereas the ICC definition that Heaps likes isnt testable, its just a collection of symptoms, which leaves it open to misdiagnosis. Even in past ME epidemics there have been other illnesses that have been confused with ME patients because the symptoms are very similar, such as Addisons and Wilsons disease so it is very important that it is tested properly as the above diseases are eventually fatal if not treated.

    Unfortunately because of the complete lack of knowledge on ME by most doctors and the false belief that it is psychiatric illness, or that there are no tests to diagnose it, it is hard for people to get the tests to conform the diagnosis.

    However if people have a sympathetic doctor and printed out the new Hyde definition and got them to read it they might have a chance of getting some of the testing done. I think the tests that people should try and get done first are the Neuropsychological tests outlined on page 11, because they dont involve any expensive machines and will quickly show if someone has neurological symptoms, which if they have, should then lead to the doctor ordering other tests which will rule out other neurological diseases and confirm the diagnosis.

    Unfortunately the whole Me situation is a complete mess at the moment manly due to financial interests, such as Insurance companies and governments not wanting to pay out for sick people and because there are no patents on Enteroviruses which means that there is no money to be made in researching them and treatments for them.

    The Enterovirus connection has been proven over and over again for decades by PCR, muscle biopsy and recently stomach biopsy and has been continually ignored. Dr Chia although being American tends to use the name CFS instead of ME, has found Enterovirus by biopsy in 80% of patients who have an acute onset illness, ME is caused by an infection as Dr Hyde says, and the epidemics prove it, if you dont have an acute onset you cant have an illness started by that kind of infection, so therefore you cant have ME.

    Dr Chia has successfully treated and in some cases fully cured ME patient using Oxymatrine a substance found in the Chinese herb Sophora which causes a shift between T1 and T2 helper cells and helps clear the infection theres some information on it here http://www.faqs.org/patents/app/20100022575 In patients that he has found Enteroviruses by biopsy, then successfully treated, he has then re biopsied them and it has shown that the infection has cleared.

    Unfortunately all this research has been largely ignored and even the majority of patients seem to be far more interested in things like XMRV and theres really no pressure being exerted anywhere to get any of this research properly funded, Hopefully if the Lipkin study focuses on correctly diagnosed acute onset patients he should turn up a lot of evidence on Enteroviruses, which because of his reputation might finally get listened to, and properly funded research done on treatment and better and quicker diagnostic tests for Enteroviruses, because at the moment there very hard to get and because Enteroviruses disappear into the organs after a period of time they are very hard to detect by blood tests if somebody has been sick for a while.

    Anyway although the hyde definition is quite a complicated read it is well worth spending the time, I particularly like this bit

    Garbage Bag Disease: Unfortunately, many physicians appear to be using CFS as a convenient garbage bag disease, simply telling patients whom they have no time to investigate, Oh, you have Chronic Fatigue Syndrome. It is most unfortunate that the Americans, who have now promoted the idea that CFS is the same as M.E., have only compounded the disaster. Due to this garbage bag phenomena mentality many CFS patients are never properly investigated for serious disease and most CFS patients have significant and often times treatable pathologies.

    The whole situation is all very sad and has been for a long time, but hopefully as there is now a lot of interest in the scientific community and some big names who cant be ignored like Lipkin are getting involved, it will sort out in the near future, my feeling is it is really the first time every that there is actually a glimmer of hope on the horizon that things might actually be going to be sorted out once and for all, and people may start be able to get some help, treatment and understanding of their suffering, it will still be a while away, but maybe in a few years there will be a cure for ME patients and CFS ( Garbage Bag Disease) will be forever thrown in the garbage where it belongs and doctors will have to go back to investigating their patients properly like they had to before CFS was invented and actually give all those poor misdiagnosed people their proper diagnosis and treatment.

    All the best
     
    halcyon and mon me like this.
  8. taniaaust1

    taniaaust1

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    Brian Hyde states in that link "Second phase pain syndromes, particularly during the first few months of illness should be sufficient to alert the physician to the diagnoses of M.E. encephalopathy and may include any or all of the following: a/ POST EXERTIONAL MALAISE (inability to recover witin a normal period after exercise) is often quoted as a cardinal feature, however, IT CAN BE MISSING IN SOME SEVERELY DISABLED M.E. PATIENTS WITH INABILITY TO EXERCISE or even walk such as many patients with dysautonomina.'

    Wow for the very first time ever Ive seen in writing, something which I was trying to explain on this forum yesterday about myself and me starting each day usually refreshed and at my full ME chip (or spoon) level (except when I go shopping which sometimes Im still recovering a little the next day but often Im "fine" (as long as I do nothing) there too by the next day.

    So for myself.. Nowdays I dont get much in the way of postexertional symptoms and hence can rarely trigger off that exhaustion state of ME which lasts or many of my other ME symptoms, due to the ME symptom of the POTS stopping me. It just dont allow me to be physical enough to get into the ME crash state and be able to go into true post exertional and symptoms due to that. My POTS exercise tollerance is far lower then my ME exercise tollerence level and can send me unconscious fast if Im being physical active in any way.

    so hence no 48hrs of post excertional fatigue as it just isnt usually possible for me.
    Due to that I start my mornings refreshed (other then the often severe lack of sleep due to severe insomina but when I do get sleep, I wake up refreshed most of the time).
    It sucks as I often feel refreshed but cant do anything as it just floors me literally FAST when I go to do things. I go from being good.. to other symptoms and collapsed sometimes unconscious in sometimes less then ONE MINUTE when Im doing something exertive, so just unable to exert at all.

    That is how I ended up collapsed on the floor of the others house recently when I got taken to visit another with ME.. I felt the exertional point SUDDENLY coming in with no real warning from just sitting and chatting to her, didnt even have time to say bye and get myself out to a car before I was on the floor unable to walk to get myself there. I was on the floor in about 30 seconds from starting to feel unwell and then unable to get back up.

    My symptoms happen hard and fast with activity... and I can (thou not always) recover fast from POTS. I find it hard to explain to people that it isnt tiredness or exhaustion which stops me from doing things..but rather my other symptoms.. autonomina or neurolgical symptoms eg seizure. Tiredness or exhaustion is one of my lesser symptoms (probably rates about 10th as far as symptoms go of importance for me).
    ......

    Due to all this and lack of "fatigue" but rather other ME symptoms which affect me instead with severe exercise intollerance so not much in the way of post exertional fatigue.. I dont fit into any of the CFS severity scales out there either. eg take David Bells scale for example http://notdoneliving.net/foothold/scales/david-bell

    I dont get symptoms at rest. That's rated 90 out of 100 on his scale but I do get SEVERE symptoms with exercise/activity (and that is rated 50 or under).
    My activity level thou is probably not even at 30% of what it was before I got ME (that's only 20 on that bell scale if I cant do 30% of previous exercise) as Im severely restricted in what I can do physically. Im not confined to bed thou most of the day as I dont feel ill nor do I have symptoms if Im sitting not moving much at all, with legs up.

    I havent seen one CFS severity scale yet who caters for those like myself who just cant be active and then due to the inability to be active not having post exertional symptoms all the time. (avoiding seizures and unconsciousness I get is enough reason for me not to be active and taking me into those symptoms all the time)
     
  9. justy

    justy Senior Member

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    Hi, i think Dr Hydes definition is enticing because it sounds more medical and he mentions a lot of fancy tests that can be performed. This all spounds good but the reality is that the tests he mentions have not been agreed upon by anyone other than himself that they lead to a definitive diagnosis. SPECT scans are frequently mentioned by him and the Nightingale foundation as a definate M.E marker but this hypothesis has not been widely tested either by the Nightingale foundation or Dr Hyde. Im not saying it cant be true but that it hasnt been definitively proven -if it is such an important marker why has more research not been done into it?

    SPECT scans looking for changes in M.E patients are notoriously difficult to interpret and most Doctors are not able to interpret them for M.E patients.

    The acute onset thing is also currently a red herring. Many people may have had an initial illness but as Heaps real mentipons above if you went to your GP with it youd be told oh youve got a virus. I had a possible gradula onset, but to be honest i cant really tell as ive been ill for so many years, had young children when i nwas first ill and seemed to always have some virus or other, then i got ill and was told it was all in my head for 16 years -so that hardly looks acute but could have just been that i wasnt treated properly which we know is common for M.E patients.

    I love the part where he states it is passed from an oral or fecal route -On what evidence is this based? Is he saying he knows that its an infectious illness and that has been proven now and he klnows how it is transmitted?

    I have much respect for all who work in the M.E/CFS field, including Dr Hyde but some of his statements i dont feel are borne out by the majority view in the M.E field.

    Im happy with the new ICC definition but i would like to see this backed up with lists of tests and markers and possible treatments currently available. The people who wrote the ICC are a large group of the worlds foremost experts in M.E - they have written this definiton based on their vast clinical experience, thats good enough for me.
     
  10. Vitalic

    Vitalic Senior Member

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    The thing is, you rightly criticise this new definition for making unsubstantiated claims but then accuse the ICC for not having a list of definitive biomarkers, tests and treatments. They do discuss the potential biomarkers and evidence behind the criteria but I think rather astutely they avoid making any assertions which might be invalidated further down the line, because at this stage our state of understanding is developing and changing so quickly it would be foolhardy in my opinion to make claims of certitude about any aspect of the illness. Yes the ICC is essentially just a list of symptoms, but it is by far the best symptomatic description that has been developed so far and we should really embrace it.
     
  11. justy

    justy Senior Member

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    Hi Vitalic, yes i totally agree with everything you say. I wasnt really accusing, just musing in my own fuddled way. I agree the ICC is the best symptomatic description by far. Thanks for pointing out my muddled argument.
    Justy.
     
  12. Enid

    Enid Senior Member

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    Quite agree vitalic - post 14. Byron Hyde is still one of the best in the field.
     
  13. rlc

    rlc Senior Member

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    Hi Tania, I to was glad to see what Dr Hyde said about some patients being too sick to experience PEM, its one of the things that doesnt make any sense in the likes of the CCC and ICC where they claim that PEM or PENE are cardinal features of ME.

    The ICC basically says that only people who arent that sick have ME, because you have to be able to exert yourself to get PENE and get the diagnosis, which means anybody who is too sick to exert themselves because of Dysautonomina cant have ME, a bit of a blunder on the behalf of the ICC writers me thinks.

    All the best
     
  14. Vitalic

    Vitalic Senior Member

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    I think they should have added this scenario as a caveat, but you could argue that the inability to actually trigger PENE does not mean someone is necessarily without that symptom, the symptom could be present but it is simply not being expressed. I also suspect a portion of those who cannot exert themselves at all would have at some earlier point been able to trigger PENE - but as their symptoms increased in severity and their overall condition declined that ceased to be the case. This would be analogous to someone who experiences certain cognitive symptoms following mental exertion, however those symptoms might be suppressed at the point the patient is no longer able to engage in serious mental exertion because of other limiting factors like brain fog. You would still say the patient has those symptoms even if they are not actively being experienced.
     
  15. rlc

    rlc Senior Member

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    Hi Heaps, yes there is a lot of overlap between ME symptoms and those attributed to CFS, but the symptoms being attributed to CFS are so vague and so common that they overlap with hundreds of other diseases. Personally I find the idea of sub grouping people on symptoms very scary, because the symptoms attributed to CFS overlap with so many other illnesses, a lot of which will eventually be fatal if untreated, sub grouping by symptoms, without proper testing to rule out other diseases is going to lead to people dying and mixed cohorts stuffing up the research.

    Whats needed is extensive testing to rule out other diseases like Dr Hyde does for the CFS group, but the continual promotion of the idea that the Garbage bag disease CFS is a real illness despite the fact that it was invented out of thin air on the basis of one small study by the CDC that actually proved that everything they were trying to say and their justification for inventing it was wrong ( see http://jama.ama-assn.org/content/257/17/2297.full.pdf ) stops this from happening.

    Unfortunately using NK cell dysfunction as a diagnostic test for anything is not going to work, because it is found in a large number of other diseases a lot of which frequently get misdiagnosed as CFS, NK cell dysfunction is also caused by poor sleep, so all it really shows is that the patient is sick, any doctor who is still proposing NK cell dysfunction as a diagnostic test for CFS just hasnt kept up with the modern research, where the more illnesses they test to see if they have NK cell dysfunction the more they find.

    The incubation period is certainly of no use for the average person to get a diagnosis, (you need to know when you came in contact with someone else with it to work out incubation periods), but Dr Hyde isnt saying that it is, it is only helpful for a doctor who is getting a lot of cases in an epidemic situation and the short incubation period if they were aware of it would alert them to the possibility of ME. The incubation period of ME is not something that Dr Hyde invented; it was something that has been recorded many times in previous epidemics, a lot of which have been in hospitals where the Drs could easily track the spread of the disease and work out what the incubation period was.

    The importance of the short incubation period and the speed that it spread in the epidemics is that it showed that it had to be an infectious organism, and the shortness of the incubation period greatly limits the number of possible culprits, e.g. Enterovirus have short incubation periods so they fit, EBV, CMV etc have long incubation periods and couldnt possible cause those epidemics. A good example of an ME epidemic can be read here http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962472/pdf/brmedj03125-0013.pdf a lot more information on the epidemics has been collected here http://forums.phoenixrising.me/show...-ME-Research-Literature-and-other-information

    What makes Hydes definition good is that it is based on fifty years of previous research in to ME. which a lot of the so called CFS experts for reasons known only to themselves have decided to ignore, and because he extensively investigates his patients which other CFS experts dont do, and has found that the gradual onset CFS patients are misdiagnosed and have missed major diseases.

    So hes starting from the point that ME is an acute onset infectious disease, so people who have a gradual onset should sack the Doctor they have and get one that will investigate them better because they cant have ME. He then lays out the tests that will confirm that these ME patients have physically measurable anomalies that not only can confirm the diagnosis, it also if the patient can get them done will save them from the psychiatrists and all their nonsense. He also on page 19 explains a list of tests that can be done to differentiate between depression and ME.

    The ICC because it doesnt explain how to do the tests that pick up these anomalies in ME patients, has nothing in it which can be used to prove to psychiatrists that their wrong and to stop interfering, the ICC just has a whole lot of symptoms with no explanations for a doctor to use, on how to get the hard evidence that they have a physical cause. There is nothing in the ICC to keep the psychiatrists at bay or to prove it is a physical illness. You need the tests that Hyde outlines to show the actual physical evidence of brain damage to get the psychiatrists to butt out once and for all.

    Sure for most people getting these tests is very difficult if not impossible, but thats because of the neglect of the disease, not because it is unreasonable to get a lot of tests to confirm a diagnosis, there are a vast number of diseases that need multiple expensive tests before a diagnosis is given and the medical community has no problem doing this for diseases that arent neglected. However it may pan out that the only test that is needed to confirm diagnosis is a stomach biopsy for Enteroviruses. Which is nothing unreasonable or overly expensive; they do them for Celiac all the time. But there is certainly nothing impossible about a doctor running the tests that Dr Hyde outlines if the doctor wanted to, but the majority think that CFS is the same as ME and that CFS patients are nuts which is why they wont run the tests.

    It would be good to see patients selected by using Hydes testing methods for research it would get rid of the mixed cohort problem.

    It would also be good to see other Drs testing the methods that Hyde outlines, Hyde seems to get a lot of criticism from some quarters with people saying well other doctors dont use the tests that Hyde does so how do we know if what he is saying is true. Personally I think its way past time that some other doctors on the planet got off their ass and tried replicating his work.

    RE To say that dr chia has cured ME patients with Enteroviruses is no different to saying Dr Lerner or Montoya have cured cfs patients with antivirals. This just leads into the sub group theory again. The ME and cfs things is a mess but to distinguish the two now would leave one group or many groups behind.

    Because there are no patents on Enteroviruses therefore no money, there has been virtually no research so nobody knows if the anti virals used by the likes of Dr lerner actually work on Enteroviruses, so they might be accidentally treating them, truth is there hasnt been enough solid research done.

    I personally think that people need to get away from the sub group theory and except the fact that it is a lot of different illnesses that are wrongly being dumped together, and until people get properly tested and get correct diagnoses this will always be a whooping big mess, the idea of sticking a vast number of people with different diseases into the same pot and giving them all the same name, but because some of them have different symptoms calling them a sub group is illogical and does lead to people dying of missed known diseases. As the groups get sorted out they are going to get split up and there will be times when one group gets more attention than the others. That just the way it has to go, if people keep lumping everyone together and searching for the one cure to fix everyone it is never going to happen and everybody will continue to suffer as they do now.

    If the Enteroviruses theory pans out and it turns out like the evidence suggests that there are several different Enteroviruses involved they should also dump the name ME, and name each illness after the different Enteroviruses causing it e.g. Coxakie B6, Echo 21 etc. I dont have any favouritism towards ME, its just that the medical evidence since 1934 shows that it is a different condition to CFS and the doctors who know the difference and then investigate the CFS patients find that almost all of the CFS patients are suffering from missed known diseases because the likes of the CDC and NICE definitions recommendations on what to test for to rule out other diseases are so woeful it defies belief.

    I think there is strength in people being united to get all the different causes of these conditions found and everyone properly diagnosed, but everybody being united in saying they all have exactly the same disease and looking for one single cure and cause is self defeating and is letting the powers that be get away with neglecting a large number of sick people and doing nothing towards getting them investigated properly and getting everyone their correct diagnosis. Meanwhile there have been a lot of different individuals and groups as Hyde points out making a lot of money out of this false belief that it is all one illness by propagating pseudo science theories about different viral causes all of which if anybody would pay some attention to the short incubation period found in ME epidemics they would immediately know cant possibly be the cause.

    RE I think the name neuro-immune disease covers a spectrum of conditions that can differentiate those that are just tired or maybe just depressed.

    Unfortunately names cant differentiate between physical and psychiatric illnesses people can call it whatever they want, but the only way to differentiate people properly is to run the appropriate tests like Hyde does, it all comes down to how good the doctor is when diagnosing the patient.

    The problem for the Britts is not that the name ME hasnt worked for them, it was doing fine until the invention of CFS and the british government with a little help from the psychiatrists decided to ignore all the evidence and declare all the sufferers nuts. Epidemic Neuromyasthenia worked fine in the states to until they tried to pretend that it was CFS. We all have to thank the CDC for inventing this mess.

    RE Whatever it is i have, i have been treating the symptoms and dysfunction i have found in lab work and i have improved whatever it is i have.

    Glad to hear youve found something thats working for you and your getting some improvement, the reality is at the moment, only a very few who have been properly investigated by the likes of Hyde can have any certainty of what is really wrong with them, and the best anyone else can do is try and find a doctor who is prepared to follow the time honored principles of medicine and do a complete family history, a complete history of the patient, a complete physical examination and do a complete differential diagnosis and then systematically tests for all the illnesses that could possibly cause the symptoms, unfortunately doctors like that are as rare as hens teeth these days and you normally have to sack lots of them before you can find a good one.

    Hopefully the Lipkin pathogen search will come up with some good results, but theres no way theyll find a single cure for everyone. Theres been decades of doctors follow the CDC advice on what to test for to rule out other diseases, and their guidelines have more holes in them then a piece of Swiss cheese so theres still going to be lots of people left out in the cold, until something is done to get everyone properly tested and diagnosed.

    All the best Heaps hope your health keeps improving!!!!
     
  16. taniaaust1

    taniaaust1

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    Hi :)

    Im fortunate I think to have experienced a lot of PEM in the past so can say I do get it with this illness as I did, before the POTS became the predominate symptom. I know I'd still be getting PEM if POTS wasnt in the way of it. If it wasnt for that.. I would of been wondering what on earth what illness I had due to not fitting the definations great now thou of cause I still do if I look at my illness as a whole and over the years span of time. Im able to say thou I get PEM with my illness based on many past years with this illness.

    I wonder how many ME people never get diagnosed as they dont fit into those boxes people put together on what exactly this illness appears like, thou not much is known about it.
     

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