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!!!!
