Is it worth explaining the difference between ME and CFS to the public??

[rlc]

Hi Bob, thanks for the kind words! Your right this is a very complex situation, the first published literature on ME is about the ME epidemic in LA in 1934 and that is 90 pages long, so if anyone wants to start from the beginning they have to start by reading a book, there are literally thousands of pages of medical literature pre 1988, and then on top of that youve got all the lies and misinformation put out by the likes of the CDC and Wessely school as well. I think because this tread was far from planned and just started out with Tuliip asking questions about a letter being written to a newspaper, which lead to more questions and answers and I think a large amount of confusion was generated in the processes. But hopefully the discussion can now continue in a slightly more relaxed fashion, because it is raising issues and information that everyone involved no matter what is wrong with them needs to know about.

The old literature is a Gold mine of amazingly useful information that the scientific community needs to know, and it has unfortunately been suppressed by the actions of the CDC and Wessely etc, Things like the 4-7 day incubation period that was found in all the epidemics, which was often very easy for them to work out because they happened in situations like hospitals. This is invaluable because when looking for the cause, you can immediately see that any viruses that have a longer incubation period cant possibly be the cause, so there no need to waste time and money investigating them.

Twice in the past that I know of, they used infectious material from ME patients to infect Monkeys which then became very sick and damage to the monkeys was then seen at autopsy. This proves its infectious, so you can immediately say hey Wessely and Reeves stick your psychiatric theories in your, you know where and put an end to all this GET CBT nonsense before it kills anyone else.

If these experiments could be redone using modern viral detection techniques, they could test the monkeys for any viruses they might have first, then infect them and re test them and you would very quickly be able to find what new virus had appeared and was the cause, and then work on developing treatments. There are already available broad spectrum anti Enteroviral drugs whose success can be measured by SPECT scan, and the information form autopsying the monkeys would be invaluable!

I think the fact that in the past they found being exposed to ME made people immune to Polio is very telling because Polio is a member of the Enteroviruses family which on top of the repeated findings of Enteroviral infection in ME patients further points the finger in that direction.

As I pointed out in my last post the CDC are well aware of this information and have been from the start at Lake Tahoe, They included nine references to Major ME publications going all the way back to the first one in 1934 in their 1987 report into Lake Tahoe, guess they didnt anticipate the internet and thought that nobody would ever be able to read it, it would appear there was a large amount of confusion in their own camp about what the plan was at the time. Apparently Dr Holmes who was a very junior doctor at the CDC and was put in charge of inventing CFS in the Holmes definition, asked his superiors if he should use the names ME or Epidemic Neuromyasthenia for it and got a bit of a roasting and told to use CFS.

I think something this site could do that would help a lot of people would be to set up a online library, and collect as much of the old ME publications as possible and put them in it, because at the moment their scattered all over the place. This could then be a resource not just for patients but for doctors, scientists, researchers and Journalists as well. Obviously the CDC wont be joining up to have a look, theyve already got all the information in their medical library which is one of the best in the world, But for independent researchers this could be very helpful. Because Dr Hyde has been researching this for years and has been in personal contact with all the greats of ME research like Ramsey, Parish, Shelokov etc I would imagine he has a vast collection of this material and if contacted at the Nightingale foundation http://www.nightingale.ca/ he may be willing to make some of it available for this purpose.

Personally I must admit to being more than a bit annoyed, that as someone who is very sick, I can find all this information out, just by looking around on the internet, and yet all the researchers, doctors and organisations that are supposed to be helping seem to be completely oblivious to it.

Maybe we should set up a campaign to teach them how to use Google!! Because this kind of information has been easily findable on the internet for years!

Anyway look forward to more interesting conversations with you in the future.

All the best

 

[Tulip]

Hi Tuliip, just like to say congratulations and well done for taking the time to right your letter!!!!! If it helps just one person then its well worth the time, and who knows who will read it, big things can start from small beginnings. Shame it got edited slightly, but at least the main part is out there for the world to see.

Regarding the idea of copying some of the more recent posts and moving them to the start of the tread, to try and help with some of the confusion that seems to have inadvertently occurred. If you or anyone else feels it is appropriate, please feel free to copy and paste my last post, into any earlier post where it is felt appropriate for it to be.

All the best

Thanks rlc (and bob and insearchof!)

I will edit my first post in this thread, so it includes your post and part of insearchofs post

 

[Bob]

thanks rlc... another interesting post...

yes, this discussion thread has definitely developed, and has become a very interesting place of cooperation, thoughtfulness and information sharing.

it has just occurred to me... I wonder how long the incubation period of XMRV is... just out of interest... i.e. is it anywhere near the 4 to 7 days?

what you've said about enteroviruses (and polio) is interesting... it does seem like we need a lot more research done in this area, with the most up-to-date technology.

it's an interesting thought to set up an ME library on PR... I have found that the info on the Hummingbird website is not very well laid out or collated, and some of the links are broken... So a new resource might be very helpful.
i'm afraid that i'm not very helpful at getting involved in large projects though... I can't really commit myself to them for various reasons.

 

[insearchof]

Unfortunately, there are so few CFS related doctors that most don't have the luxury of finding another doctor. However, I think that people can force their doctor into being more accurate. For example, ensure that every symptom, word and test agree with the diagnosis. Coming from an engineering and finance background where everything is precise I find it intolerable when doctors toss out words such as "fatigue", "unrefreshing sleep", "malaise", "myalgia", etc. that are really completely meaningless but are used as the basis for making an awful diagnosis.

I think it's also worth "forcing" a regular battery of tests to measure what's going on. For me it's the following:

- NKC function
- Cytokine levels
- Coxsackie B Infection levels
- EBV levels
- TGF Beta
- C4a
- Vitamin D, Selenium, Magnesium, L-Carnitine, Vitamin C levels
- Body temperature
- Portable sleep study test

Hi Floydguy

I understand there are not many CFS doctors. The point I was trying to make is - you dont need/want a CFS doctor for the purposes of a complete CFS diagnostic re-evaluation. You want a thorough physician, who will completely ignore your CFS diagnosis - put it aside, and consider other illnesses (including ME-ideally) and underlying causes.

 

[rlc]

XMRV ME, Myalgic Encephalomyelitis

Hi Bob, I think the whole Enteroviral connection is very much a missed opportunity, theres a vast amount of published evidence pointing to it, both past and present thats being overlooked. However Im quite convinced its no accident! This information is known to the powers that be and has been from the start, I feel the reason its been ignored and no money is being put into it is that the last thing the likes of the CDC and Wessely want is people finding out that ME is caused by Enteroviruses, because then theyve got a lot of explaining to do as to how theyve failed to find it, when there always has been a lot of published evidence pointing to it, and why theyve been wasting hundreds of millions of dollars on psychiatric treatments and other useless projects!!!

Regards an internet library to collect all the ME research in one place, I know what you mean its a lot for anyone person to do, but the board of this site seem to be able to organize some quite large projects so if a group of people could be got together to do it Im sure a lot could be achieved. I have links to where over 40 free articles are, and know where a lot of the other information is which I would be willing to provide.

Interesting point about the incubation period of XMRV, Now before I start in explaining this, Id just like to state to anyone reading this, because I know a lot of people are very passionate on this subject Im not trying to upset anyone Im just presenting some facts that am aware of that people might like to consider!!

Dr Hyde in this article http://www.nightingale.ca/documents/GoteborgConference.pdf amongst a whole lot of other very interesting information, including some interesting facts about what Dr Petersons been up to, who to my eyes is a very baffling character, he helped with the writing of the 1994 CDC Fukuda criteria, which was written by CDC doctors and members of the Wessely School along with Wessely himself. It says not to do things like MRIs yet he was involved in research going all the way back to Lake Tahoe which showed that ME patients, when MRIed had lesions in their brains similar to those found in AIDS patients.

Anyway Dr Hyde states in this article that the incubation period for XMRV is 21 days and therefore cant be the cause of ME, now I dont know where Dr Hyde got this information from; maybe he could be contacted to find out. But I do know that Dr Hyde is constantly involved in Court cases supporting ME patients and is careful about what he says, and is constantly thumbing his nose at the likes of the CDC and Wessely school and is well aware that if he puts something in writing that he cant back up, their circling ready to pounce and destroy his reputation. I would imagine although I dont know for sure that this incubation period is in mice because of the date of the article and the fact that nobody has scientifically proved that it can cause symptoms in humans yet. However all the known human retroviruses do have long incubation periods, e.g. HIV can take months to years for symptoms to show.

The recent attempts to infect monkeys with XMRV helps to throw some light on the situation link http://www.virology.ws/2011/02/17/xmrv-infection-of-rhesus-macaques/ It says that although they managed to infect the monkeys with XMRV they found that Rhesus macaques infected with XMRV did not display obvious clinical symptoms. Analysis of peripheral blood revealed increases in the number of circulating B and NK cells. Anti-viral antibody titers were detected after infection and re-infection of animals but soon decreased.

Other infected animals were sacrificed during the acute phase of infection to identify pathological changes and sites of virus replication. No pathogenic consequences were observed except for the formation of germinal centers in spleen and lymphoid organs, changes that are expected after immune stimulation.

And that Plasma virus was again detected in one of the positive animals on day 291.

So after 291 day the monkeys did not display obvious clinical symptoms and kept bouncing round like normal monkeys. NK cells went up not down, anti viral antibody titers soon decreased and when autopsied showed no signs of disease except for minor changes youd expect to find after any immune stimulation.

So as far as an incubation period between first getting infected and then showing signs of being very sick, after 291 this still hadnt happened so it would appear that there is no incubation period in monkeys because they dont get noticeably sick and certainly not within 4-7 days.

This makes a very interesting comparison to previous Monkey studies with ME, I dont have the full articles but they are mentioned in some of the old literature they say.

Infectious material was transferred from patients to monkeys during an epidemic in Adelaide, Australia in 19491950. The monkeys became ill and post-mortem examinations were carried out a month later. The only abnormalities discovered by Pellew and Miles (1955) were minute red spots along the course of the sciatic nerves. Under the microscope the red spots contained localised collections of inflammatory cells, which had also infiltrated the area where the nerve roots come out of the spinal cord. The red colour of the spots was due to leakage of red blood cells. ME/NM is very rarely fatal so that a post-mortem study showing similar haemorrhages in humans is unique. However, during the North of England epidemic in 1955 Andrew Wallis described the findings in a patient in her fifties, who developed the characteristic febrile illness leaving her debilitated and emotional. During the next fifteen months she continued to run a low grade fever with continued mental deterioration before she died. The post-mortem revealed numerous small haemorrhages around blood vessels in the cerebral cortex extending into the mid-brain, which were considered to be the cause of her death. These abnormalities may be found when patients die as the result of severe chronic alcoholism. This was not a factor in her case; she had had a febrile illness. Vasculitis involving the skin was recorded during outbreaks in Cumberland, Durham and North West London in 1955. A maculopapular rash may appear during the return of features of the initial illness such as flu-like symptoms and enlargement of lymph glands and liver. This skin overlying areas of localised muscle weakness may be affected at the time of these attacks.
Link here http://www.investinme.org/InfoCentre Epidemics.htm

And

Although investigations for the viruses known at that time were negative, an agent was repeatedly transmitted to monkeys from two patients (Pellew and Miles, 1955). When the monkeys were killed minute red spots were observed along the course of the sciatic nerves. Microscopically infiltration of nerve roots with lymphocytes and mononuclear cells was seen and some of the nerve fibres showed patchy damage to the myelin sheaths and axon swellings. Similar findings had been produced by the transmission of an agent to monkeys from a child with poliomyelitis in Boston, Massachusetts, in 1947 (Pappenheimer, Cheever and Daniels, 1951). However, in these monkeys the changes were more widespread, involving the dorsal root ganglia, cervical and lumbar nerve roots and peripheral nerves. Perivascular collars of lymphocytes and plasma cells were seen in the cerebral cortex, brain stem and cerebellum, spinal cord and around blood vessels to the nerve roots. There was no evidence of damage to the nerve cells in the brain or spinal cord. The distribution and intensity of the lesions varied considerably from monkey to monkey. This pathological picture of mild diffuse changes corresponds closely to what might be expected from clinical observations of patients with neurological involvement in ENM.

Link http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2425322/pdf/postmedj00263-0008.pdf

Although I dont have access to the article on the 1934 Los Angeles Epidemic at the moment the HFME site says this

Transmission of M.E. to monkeys has been successfully demonstrated and has produced central nervous system and parasympathetic nervous system injury in at least two separate sets of experiments; in 1934 where cross sections of the spinal cord demonstrated numerous minute haemorrhages in the grey matter and in 1949-51 in the Adelaide, Australia epidemic of M.E. where a radiculitis of the sciatic nerve was demonstrated with small punctate lesions of the myelin sheath (Hyde & Jain 1992, p. 40).

Link http://www.hfme.org/topicoutbreaks.htm

So my impression is that are far as XMRV and ME is, that people are very much barking up the wrong tree.

One fact that seems to have slipped under the radar and not been noticed by the world is this.

When the WPI announced its original findings to the world Dr Mikovits said this to Scientific America To find the retrovirus, Mikovits and her team studied documented cases, such as CFS outbreaks in a symphony orchestra in North Carolina and in Incline Village, Nev. "We found the virus in the same proportion in every outbreak," she says. But how are people getting this retrovirus?

Link http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus

Now although the WPI has continually made claims about having blood samples collected by Dr Peterson from previous confirmed ME epidemics. It turns out to put it politely that the WPI were incapable of telling fact from fiction, or to be less polite this statement by Dr Milkovits is a lie!!!!

Because their findings are not based on testing samples from previous confirmed ME epidemics! According to their own web site they are based on selecting people using the CDC Fukuda criteria and the CCC and they havent got their results from testing samples from previous ME epidemics http://www.wpinstitute.org/research/research_biobank.html And they have since made other statements confirming this. More information from their own site confirms this also http://www.wpinstitute.org/xmrv/xmrv_qa.html so because of this I must admit to viewing every claim their making with a large amount of suspicion. And as discussed previously in this tread a group of people selected using the CDC Fukuda criteria and the CCC are likely to contain a large number of misdiagnosed people and have virtually no chance of selecting a group of people who have all got ME as defined by all the old literature and the WHO.

More interesting information on XMRV and ME can be found here

http://www.hfme.org/xmrvcfsandme.htm

Obviously the XMRV saga has a way to go yet and there are other big studies planned, however I do find the fact that nobody else in the world can find it except the WPI, and even scientists that previously supported them are now saying they cant find it. Even the recent Singh study couldnt even find it in patients that the WPI said had got it and Singh had been a strong supporter of the WPI in the past.

The WPI seems to be claiming that theyre the best in the world at finding XMRV and are doing techniques that are different to everybody else which is why theyre the only ones that can find it. This claim I find highly dubious for the simple reason that a retrovirus is a retrovirus no matter what variant it is. And the scientific community can easily and routinely find all the other human retro virus like HIV, HTLV-1, HTLV-2 etc, they can easily find retroviruses in other primates such as the SRV family of retroviruses in monkeys and they can easily find XMRV and the other mice retroviruses in mice and have been able to do this for decades, and there is nothing particularly unique about XMRV that sets it apart from other retroviruses. So with this information in mind and the WPIs previous struggles with the truth, my reaction to their claims is hmmm yeah whatever.

My personal view is that the logical outcome of all of this is going to be, that years of research and hundreds of millions of dollars are going to be wasted and its going to end up with the WPI being given an explanation on how to properly decontaminate their laboratory, why its not a good idea to tell lies in Scientific America, their reputation is going to be in tatters and theyll close down, and thousands of very angry patients are going to be writing to them for their money back for all the expensive blood tests that they got conned into paying for. Which personal Im amazed that it is Legal to sell blood tests that havent been verified by any other source to be in anyway accurate, for a virus that theres no proof whatsoever causes a single symptom in human beings, I thought people like the FDA had laws about this sort of thing???? I hope Im wrong and something comes out of all of this that helps at least one sick person on the planet, but I certainly wont be putting any money on it. And as far as what does XMRV have to do with ME as defined by the historical literature and the WHO goes Id have to say absolutely nothing, except that almost everybody involved is continually and wrongly applying the name ME to all the people who get misdiagnosed by the use of the awful CFS definitions.

Personally I think this is a tragedy for the people with ME because there is a hundred thousand times more evidence that Enteroviruses are causing ME compared to the tiny amount of evidence from one small group that have supposedly found XMRV in patients. If even a fraction of the time and money that is going into XMRV was spent on studying Enteroviruses it is quite likely that the answer would be found in no time. But like I say the powers that be know about all the research connecting Enteroviruses to ME and its not in their best interests to have anybody investigating this, and I would imagine that their more than happy to have everybody chasing their tails looking into XMRV rather than looking into Enteroviruses and finding the cause.

All the best

 

[Tulip]

I agree rlc, I don't think XMRV has any connection to Myalgic Encephalomyelitis. It probably does to one of the illnesses that fit into the mothership "CFS" though.

So that brings us to the question of what the hell can we do to get them to try to find a cure/treatment and vaccination for Myalgic Encephalomyelitis??. The whole issue makes me furious.

 

[floydguy]

Hi Floydguy

I understand there are not many CFS doctors. The point I was trying to make is - you dont need/want a CFS doctor for the purposes of a complete CFS diagnostic re-evaluation. You want a thorough physician, who will completely ignore your CFS diagnosis - put it aside, and consider other illnesses (including ME-ideally) and underlying causes.

Unfortunately those "thorough" doctors are just as difficult to find as a good CFS doctor. I don't think it's off the mark to say that after running a handful of meaningless tests 95% of them will put you on Cymbalta or Lexapro. The other problem that I've run into is that many have their own "pet" theories like dysfunctional thyroid or Lyme Disease. Probably the most thorough workup I ever had was with Ritchie Shoemaker. He was pretty good from the thoroughness perspective.

 

[Bob]

I agree rlc, I don't think XMRV has any connection to Myalgic Encephalomyelitis. It probably does to one of the illnesses that fit into the mothership "CFS" though.

So that brings us to the question of what the hell can we do to get them to try to find a cure/treatment and vaccination for Myalgic Encephalomyelitis??. The whole issue makes me furious.

The WPI's present focus is on MLV-related viruses, but they are interested in the whole spectrum of neuro-immune diseases, so I doubt if they would rule out researching enteroviruses, if they thought that would be productive research. Maybe they should team up with Chia more closely so that Chia could test their patients for enterovirus. And maybe they should team up with Byron Hyde, so he can carry out his SPECT scans on their patients. It would be interesting to see how all the information correlates.

 

[floydguy]

I agree rlc, I don't think XMRV has any connection to Myalgic Encephalomyelitis. It probably does to one of the illnesses that fit into the mothership "CFS" though.

So that brings us to the question of what the hell can we do to get them to try to find a cure/treatment and vaccination for Myalgic Encephalomyelitis??. The whole issue makes me furious.

Well, why not follow Dr. Chia's treatment program? I may start on Oxymatrine soon. I'll let you know how it goes!

 

[floydguy]

My personal view is that the logical outcome of all of this is going to be, that years of research and hundreds of millions of dollars are going to be wasted and its going to end up with the WPI being given an explanation on how to properly decontaminate their laboratory, why its not a good idea to tell lies in Scientific America, their reputation is going to be in tatters and theyll close down, and thousands of very angry patients are going to be writing to them for their money back for all the expensive blood tests that they got conned into paying for. Which personal Im amazed that it is Legal to sell blood tests that havent been verified by any other source to be in anyway accurate, for a virus that theres no proof whatsoever causes a single symptom in human beings, I thought people like the FDA had laws about this sort of thing????

Caveat emptor. It's certainly not dangerous to put your blood in a tube and put in the mail. It's possibly worthless but in no way does it harm people. I got tested and I am glad I did. My negative test allowed me to continue to move forward and focus on other things other than XMRV, such as enteroviruses. if I had tested positive (or hadn't gotten tested at all) I'd probably be sitting back waiting for ARVs to be approved.

I am not sure I want Big Pharma, er I mean the FDA to have any more power than it already has.

 

[heapsreal]

With the whole arv's especially the arv isentress, it also works against herpes infection eg ebv/cmv/hhv6, so i wonder if some of the people using this drug and improving is because its treating the herpes infection or a retrovirus or maybe both. I also think if xmrv doesnt pan out, that we should be looking at immune defiencies especially since nk function is a common abnormality in cfs and this would make sense of all the differing infections everyone has. There are many things out there that can cause these infections to reactivate etc. So im not concerned if xmrv isnt it, my concern is that the authorities just stop looking. Also i hope WPI keep looking for answer to neuro-immune diseases and people keep supporting them as i think any govt funding towards cfs will be limited and funding will need to come from the cfs population.

cheers!!!

 

[insearchof]

Hi Bob,

I think the whole Enteroviral connection is very much a missed opportunity, theres a vast amount of published evidence pointing to it, both past and present thats being overlooked. However Im quite convinced its no accident! This information is known to the powers that be and has been from the start, I feel the reason its been ignored and no money is being put into it is that the last thing the likes of the CDC and Wessely want is people finding out that ME is caused by Enteroviruses, because then theyve got a lot of explaining to do as to how theyve failed to find it, when there always has been a lot of published evidence pointing to it, and why theyve been wasting hundreds of millions of dollars on psychiatric treatments and other useless projects!!!

I agree with this observation but have my own adjunct theory on the motivation of the governments ignoring this. I think it goes back to the holy grail of medicine the alleged success of the polio vaccine which gave rise to the vaccination industry, and the need of big pharma to protect that.

What if, the general public woke up to the news, that polio as was traditionally
understood and classified (pre 1958) never went away and that the polio vaccines were not as successful as we were told? What if they woke up to find that polio was still flourishing, albeit with the risk of paralysis diminished?

What if they learnt, that largest portion of polio (as understood pre 1958) had created huge epidemics from the late 1970s into the 1990s as a direct result of the polio vaccine that reduced paralysis?

The dreaded scourge of modern medicine was alive, well and had been left to thrive?

Wouldnt they have a lot more explaining to do?

Here is a little of what I posted elsewhere on another thread to explain the matter.

This is correct Bullybeef. If I recall the first outbreak of atypical polio (ME) following a poliomyelitis epidemic was in *1934 at the LA County General Hospital. From this period up to 1978 (or thereabouts if my memory serves correct) ME was known as atypical poliomyelitis or non paralytic polio.

Polio is caused by enteroviral infection. 95% of people who contracted enteroviral infections associated with polio did not become ill during the epidemics. 5% however became very ill indeed. Of this 5% only 1% got the paralytic form of polio - with the vast majority (4%) getting non paralytic/atypical polio (who incidentally, when followed up 30-40 years later were still very sick and disabled)

Whether you got the paralytic form of polio or non paralytic form (ie: called non paralytic polio, atypical polio or poliomyelitis -later to be called ME) - it was all regarded as polio but only up until 1958. Then in 1958 they changed the infectious diseases reporting requirements associated with polio. This incidentally, coincided with the arrival of the polio vaccines.

With the introduction of these changes, they stated that to have paralytic polio, you had to have muscle paralysis and difficulty for more than 20 days (if I recall). This had not previously been required for a diagnosis of paralytic polio. **(This reduced the statistical number of paralytic cases immediately).

Secondly, new categories were created: aseptic meningitis (very hard to distinguish from non paralytic polio) coxsackie virus and echo virus (types of enteroviruses). Non paralytic polio cases were then diagnosed or re assigned to many of these new classes. Thereafter, only paralytic polio was known as ''polio''. This then resulted in the number of reported polio cases (both paralytic and non paralytic) dropping - interestingly - at the time of the introduction of the early polio vaccines which were in fact causing provocation polio. These reclassifications in turn made it look as though the polio vaccines were solely responsible for the large drop in polio cases.

As a result of the reclassification (terming non paralytic polio - coxsackie, echo etc) and renaming non paralytic polio/atypical poliomyelitis to ME in 1978 - the association between ME and polio and its highly infectious epidemic nature was largely lost to many doctors as the years rolled by and with it, the significance of the role that enteroviral infection plays in this illness. Thankfully, there are doctors such as John Chia (US) who have been pursuing this association in recent years. The historical research and medical literature on enteroviral infection, as well as the work of John Chia - show that an enterovirus is notoriously difficult to isolate in the blood and that it goes quickly to and remains in the tissues for many years. Sounds very familiar to the findings of the XMRV infectivity study in monkey's doesn't it - where it was found to migrate quickly from blood to tissue?

As the virus migrates out from tissue (presumably with corresponding crashes), more virema can be detected via serology (though you need to continually run blood tests and detection levels are never very high). Consequently, if you can convince a doctor to give you a serology based test for enteroviral infection and it comes back in the low positive range - they are more than likely to down play it -ie: enteroviral infections are common and are of no consequence. And of course this is true for 95% of people - but medical literature attests to the fact, that for 5% of people, it is an entirely different story..... -and although we do not see paralytic polio any more -due to vaccinations - the remaining 4% who were serious ill and disabled for 30+ years are never mentioned .....have all been forgotten - and especially the fact that what they had/have is polio -because they were disassociated from polio due to shifting classifications. In fact to ensure that this remains so, the lingo employed today reinforces the notion of estrangement by speaking in terms of polio (paralytic polio) and 'non polio' entroviral infections''.

** addition

 

[Sherard]

I have not authentic information about this...
So i don't want to misguide you people and provide you fake information..

 

[insearchof]

I have not authentic information about this...
So i don't want to misguide you people and provide you fake information..

Hi Sherard

Welcome to the forum and this thread.

 

[rlc]

Hi Bob, totally agree Hyde, should be indentifying the patients with SPECT scans etc and Chia should be doing the tests, but it shouldnt be being done on such a tiny scale with a couple of doctors and maybe the WPI involved. Theres a major epidemic going on!!!!

Hyde could teach a group of 50 doctors how to identify ME patients with SPECT scans etc in a few of days, they could then spread out through the world to identify patients, I think its important that this work is done in a lot of different places at once because it would appear that several different Enteroviruses may be implicated.

And then it shouldnt just be Chia and maybe the WPI involved, the entire worlds scientific viral community should be involved, Dr Lipkin should be involved and there should be a very large budget available. And the original Monkey studies should be redone!! This is what should be done and would be done in any other epidemic, look at the resources that have gone into bird flu in the last few years thats only effected a thousand people at the most I think. MEs effected millions. But like I say this isnt a medical or scientific issue or in any way got anything to do with compassion for sick people, it is and has been since 1988 a political and financial issue, and the people who have created this mess are going to do everything they can to stop the truth getting out!

If anyones interested this came out this morning, Jonathan Stoye is now saying the original WPI paper should be retracted http://articles.latimes.com/2011/may/11/news/la-heb-xmrv-chronic-fatigue-20110510 )

All the best

 

[rlc]

Hi Floydguy Regards getting a good doctor I have for some time been writing up all the things I know about how to increase your chances of getting a correct diagnosis and how theres a lot of things you can do which will greatly increase your odds of success, Ill hopefully have it finished in the next couple of days, Ill post it here when finished, it may have some information in it that youd be interested in.

I second what Insearchof says, if you think you maybe misdiagnosed the last thing you want is a CFS doctor. Its a well known rule and fault in medicine that doctors who specialise in any subject tend to only see what they specialise in, Endocrinologists see endocrine problems, Neurologists see neurological problems, CFS doctors see CFS, if your problems are gastrological instead your stuffed.

Its part of the human condition everybody interprets the world based on what they know, which frequently has nothing to do with whats actually going on. What you need is a good old fashioned doctor, whos prepared to start again and review your notes, and take note of any failed tests, take a full history of your family, your history, history of your illness, actually listen to you and write up all your symptoms, properly examine you (As Dr Hyde says hes constantly amazed at how many patients he gets that have seen a lot of doctors and not one of them have even looked in the patients nose!) then based on all the evidence that the doctor has then collected there supposed to do a full differential diagnosis which is a list of every possible disease that could possibly cause your symptoms and then systematically tests for every possibility starting with the most common. This is what every doctor in the western world is taught to do in med school!!!! By the sounds of things you may have noticed that very few of them can be bothered doing this, but some still do and thats what you need to find.

Its also worth bearing in mind that if doctors want to diagnose people as having CFS then they damned well have to stick to the rules, and if people have symptoms outside of those mentioned in the diagnostic criteria being used in whatever country there in, then they dont qualify for the diagnosis and if they have any failed tests then they also dont qualify for the diagnosis. I see you are in New England so therefore you are covered by the Reeves CDC definition. If you have symptoms that are not mentioned in this definition or any failed tests you can then find a new doctor, take a copy of the definition with you and say excuse me Im very concerned that Ive been given this diagnosis and my results show that I dont qualify, and Im very concerned that Im misdiagnosed could you please start again and review my case to find out whats really going on! If they say no, you say youre sacked!!!!!! And keep looking for a new doctor until you find one thats prepared to do their job properly!!!


Regards. It's certainly not dangerous to put your blood in a tube and put in the mail. It's possibly worthless but in no way does it harm people. I got tested and I am glad I did. My negative test allowed me to continue to move forward and focus on other things other than XMRV, such as enteroviruses. if I had tested positive (or hadn't gotten tested at all) I'd probably be sitting back waiting for ARVs to be approved.

Thats fine for people who got negative tests, but the complete opposite applies for the people, who had positive tests, If as every new study thats coming out seems to indicated that the WPIs results are caused by faulty methods and contamination, then this means that there are a lot of people who have been doing what you said you would of done sitting back waiting for ARVs to be approved. If they have another condition that could be treated or a potentially fatal one like a slow progressing cancer, then it means their health and possibly life have been endangered by sitting back waiting for ARVs and if people have been taking ARVs which are highly toxic for a virus they dont have its very likely to lead to permanent health damage. The WPI should of waited for other sources to confirm the results before charging people for blood tests, its un scientific and bad Medicine that they didnt, and has tarnished their reputation with a lot of people.

All the best

 

[floydguy]

Hi Floydguy Regards getting a good doctor I have for some time been writing up all the things I know about how to increase your chances of getting a correct diagnosis and how theres a lot of things you can do which will greatly increase your odds of success, Ill hopefully have it finished in the next couple of days, Ill post it here when finished, it may have some information in it that youd be interested in.

I second what Insearchof says, if you think you maybe misdiagnosed the last thing you want is a CFS doctor. Its a well known rule and fault in medicine that doctors who specialise in any subject tend to only see what they specialise in, Endocrinologists see endocrine problems, Neurologists see neurological problems, CFS doctors see CFS, if your problems are gastrological instead your stuffed.

Its part of the human condition everybody interprets the world based on what they know, which frequently has nothing to do with whats actually going on. What you need is a good old fashioned doctor, whos prepared to start again and review your notes, and take note of any failed tests, take a full history of your family, your history, history of your illness, actually listen to you and write up all your symptoms, properly examine you (As Dr Hyde says hes constantly amazed at how many patients he gets that have seen a lot of doctors and not one of them have even looked in the patients nose!) then based on all the evidence that the doctor has then collected there supposed to do a full differential diagnosis which is a list of every possible disease that could possibly cause your symptoms and then systematically tests for every possibility starting with the most common. This is what every doctor in the western world is taught to do in med school!!!! By the sounds of things you may have noticed that very few of them can be bothered doing this, but some still do and thats what you need to find.

Its also worth bearing in mind that if doctors want to diagnose people as having CFS then they damned well have to stick to the rules, and if people have symptoms outside of those mentioned in the diagnostic criteria being used in whatever country there in, then they dont qualify for the diagnosis and if they have any failed tests then they also dont qualify for the diagnosis. I see you are in New England so therefore you are covered by the Reeves CDC definition. If you have symptoms that are not mentioned in this definition or any failed tests you can then find a new doctor, take a copy of the definition with you and say excuse me Im very concerned that Ive been given this diagnosis and my results show that I dont qualify, and Im very concerned that Im misdiagnosed could you please start again and review my case to find out whats really going on! If they say no, you say youre sacked!!!!!! And keep looking for a new doctor until you find one thats prepared to do their job properly!!!


Regards. It's certainly not dangerous to put your blood in a tube and put in the mail. It's possibly worthless but in no way does it harm people. I got tested and I am glad I did. My negative test allowed me to continue to move forward and focus on other things other than XMRV, such as enteroviruses. if I had tested positive (or hadn't gotten tested at all) I'd probably be sitting back waiting for ARVs to be approved.

Thats fine for people who got negative tests, but the complete opposite applies for the people, who had positive tests, If as every new study thats coming out seems to indicated that the WPIs results are caused by faulty methods and contamination, then this means that there are a lot of people who have been doing what you said you would of done sitting back waiting for ARVs to be approved. If they have another condition that could be treated or a potentially fatal one like a slow progressing cancer, then it means their health and possibly life have been endangered by sitting back waiting for ARVs and if people have been taking ARVs which are highly toxic for a virus they dont have its very likely to lead to permanent health damage. The WPI should of waited for other sources to confirm the results before charging people for blood tests, its un scientific and bad Medicine that they didnt, and has tarnished their reputation with a lot of people.

All the best

RLC - Thanks for the reply. As I said before, getting a proper workup is nearly impossible which is why most of us are in the situation we're in. I look forward to your writeup to see if I've missed anything.

I've probably gotten a better work up than most. But the fact remains I am in limbo land in the cross section of CFS/Lyme/Immune Dysfunction/Biotoxin Exposure/CNS Dysfunction, not really meeting any particular neuro-immune disease but having elements of all. I generally meet the immune/neurological criteria for CFS except fatigue is not really that prevalent in my illness. PCPs these days I think are terribly un-equipped to deal with multi-dysfunctional patients. Just after you shake their hand you have approximately 30 seconds to describe your situation and then it's time to go. The only ones who spend more time with you tend to be specialists and as you said they end up labeling you with whatever their favorite pet theory is whether it's Lyme Disease, CFS, Thyroid Dysfunction, etc.

We'll have to disagree on the WPI. What they did might not have been ideal or "scientifically appropriate" but I think their hand was forced and they made the best decision they could under the circumstances. Regardless of their actions people trust the WPI and that's where the loyalty comes from. I personally met Judy Mikovits and Annette Whittemore and believe that they are trying to solve the problem of CFS. I am really not sure of most others.

 

[rlc]

Hi heapsreal, very valid point who knows with people who are taking ARVs what the drugs are working on, as you point out drugs like Isentress are being shown to be effective against the whole Herpes family of viruses and will probably turn out to be effective against other families of viruses as well. Its also perfectly possible that the drugs are stimulating a reaction on some part of the body thats bringing benefit to the patients and has nothing to do with viruses at all.

Unfortunately medicine is incredibly complicated and A+B is very seldom followed by C. Because of the stubborn refusal on the behalf of almost all researchers involved in this subject to extensively test people in the studies to make sure theyve actually all got the same illness, and are instead relying on the woeful diagnostic criterias for CFS instead, which guaranties a mixed bag of different illnesses. And the complete lack of adequate funding available, all the research thats being done is just adding to ever greater confusion, leaving everyone none the wiser as to what results like some people feeling a bit better after taking ARVs actually means.

All the best

 

[rlc]

Hi Floydguy, totally understand the feeling of being in Limbo land, was stuck there myself for a long time, but there are good doctors out there who can help, its just a matter of finding one, which isnt always that easy.

I went from being stuck with a total dim wit who actually said to me that there are only two possible causes of fatigue, depression and CFS so it was basically my choice if I wanted to take anti depressants or except a CFS diagnosis, after putting a complaint through to a patient advocacy group I managed to get transferred to a doctor who has done a large number of tests and referred me to specialists and the hospital who have done a large amount more, once you can get rid of the curse of a CFS diagnosis theres nothing difficult or unusual about getting things like 10 different blood tests done at a time, its quite standard practice for everyone else who doesnt have a CFS diagnosis, but most doctors believe that CFS patients dont fail standard blood tests so there no point in doing them. Which is leading to people all over the world not getting a proper investigation to find out whats really wrong with them.

If youve got a CFS diagnosis and fatigue isnt really a prevalent symptom, Id say that theres a very good chance that the diagnosis is, that your doctors an idiot. Ill try and get the information on how to get a better chance of a correct diagnosis written up and posted in the next few days. If you have failed standard blood tests that youre wondering about, if you post or PM them I can run them through diagnostic software and see if it comes up with any answers if you want.

Regarding WPI theres no need to come to any agreement, although this tread got off to a bit of a rocky start, I think everyones quite happy now for people to post different ideas as food for thought without anyone getting to worked up about anything.

All the best

 

[taniaaust1]

I would like to find out how many of us on this forum have received a ME diagnosis using the Brain SPECT scan.

It would be nice to figure out the proportions for each country as well : Australia, Canada, U.K., and U.S.A.

It would be interesting to have a poll on this subject.
Anyone interested?

Ive had a spect scan before as a part of a ME/CFS study, I dont know if it thou was the same sort of spect scan he talks of or not.
One thing I found that is the report said my SPECT scan was normal but the ME/CFS researcher said it wasnt and did show up ME abnormality. So I think they sometimes read them differently.
........................

The situation with my EEG brain scans was different. I was told they were normal but on getting hold of the scan reports (I had two done a year apart), they both clearly stated i had "non specific abnormalities" (in other words abnormalities were there but they were non specific ones as various things can cause the abnormality... not related to one illness).

So I dont think one can trust really what is being told unless the ones looking at the scans really know what they are looking for when it comes to ME.