Video Dr. Byron Hyde - Enterovirus theory?

[Biarritz13]

In this context it means to find or retrieve.

I see! Thank you a lot .

 

[Dechi]

I am sorry, maybe it's due to my english level but I don't understand this part of the transcript : "So you need two things to define ME, and it's very simple: either recovery of an enterovirus in an acute onset, which is very hard to do, because nobody suspects it; or chronically, by looking at the stomach mucosa, and recovering the capsid protein, which is actually very easy to do if you've had a stomach biopsy, and a lot of these patients have because they have gastric problems immediately after and often chronically with this disease."

"You need two things to define ME, either recovery of an enterovirus"? How can a recovery can help a diagnostic?

Il dit que pour conclure à l'EM, il faut l'une de ces deux choses : soit s'être remis d'un entérovirus apparu soudainement, très difficile à constater, soit avoir des traces de protéines de capside présentes dans les muqueuses de l'estomac, ce qu'une biopsie va démontrer et que les patients ont souvent eu déjà car ils ont souvent des problèmes gastriques à l'apparition de la maladie. (Traduction sommaire écourtée).,

 

[Biarritz13]

Il dit que pour conclure à l'EM, il faut l'une de ces deux choses : soit s'être remis d'un entérovirus apparu soudainement, très difficile à constater, soit avoir des traces de protéines de capside présentes dans les muqueuses de l'estomac, ce qu'une biopsie va démontrer et que les patients ont souvent eu déjà car ils ont souvent des problèmes gastriques à l'apparition de la maladie. (Traduction sommaire écourtée).,

C'est ce que je viens de comprendre merci mais j'ai encore du mal avec ce qu'il dit concernant la période d'incubation des 3-5 jours. Toi tu as eu des GI issues avant, pendant ou bien après?

 

[Dechi]

C'est ce que je viens de comprendre merci mais j'ai encore du mal avec ce qu'il dit concernant la période d'incubation des 3-5 jours. Toi tu as eu des GI issues avant, pendant ou bien après?

The second time I had a viral infection (don't remember the first time, less severe), yes, I had reslly bad gastro intestinal problems (severe aches and really bad diarrhea). It lasted for many hours and I had to take meds to stop it or I would have stayed glued to the toilet the whole time...

 

[bertiedog]

Enterovirus 68 is an enterovirus D species, again not linked to ME/CFS as far as I am aware (I have never seen studies or heard of individual patients with ME/CFS associated with enterovirus A or enterovirus D). Though I guess that might be because nobody has really looked.

Enterovirus D is an interesting species, though, as the viruses in this grouping have characteristics of both enteroviruses and rhinoviruses (the common cold virus).

I didn't know anything about this before, thanks for posting. I wonder if this would explain the virus I have at the moment and get from time to time. It started with lots of pain in my gut but also I have a sore throat and lots of body aches/pains and almost zero energy.

It usually resolves with some mucous which comes from my throat and the occasional sneeze and lasts around 3 days or so. I have never understood what is going on with this and maybe this is an explanation.

I did have a very raised Coxsackie virus count when tested 2 years ago by Infectolab,1:10,000 whereas the reference range was 1:1000.

Pam

 

[Kati]

Il dit que pour conclure à l'EM, il faut l'une de ces deux choses : soit s'être remis d'un entérovirus apparu soudainement, très difficile à constater, soit avoir des traces de protéines de capside présentes dans les muqueuses de l'estomac, ce qu'une biopsie va démontrer et que les patients ont souvent eu déjà car ils ont souvent des problèmes gastriques à l'apparition de la maladie. (Traduction sommaire écourtée).,

Très bonne traduction, @Dechi bravo! Aimerais-tu être bénévole pour faire de la traduction de temps en temps pour des campagnes de protets canadiens?

I wanted to share this. I have an EBV-confirmed onset. I had at the time gallbladder involvement, not stones, but sludge (like mud, really). i had several attacks in the following months, culminating with the mother of all gallbladdr attacks which sent me in the hospital for 2weeks. I am not sure when I was started on proton pump inhibitors but it was around that time, and I have not been able to get off them, most recently having increasing problems which are likely lead me to the expensive drugs. I am a bit curious about what a stomach biopsy would reveal. i have been tested for serum coxsackie B in the past and I had 2 strains, at lowish titers.

 

[Dechi]

Très bonne traduction, @Dechi bravo! Aimerais-tu être bénévole pour faire de la traduction de temps en temps pour des campagnes de protets canadiens?

I wanted to share this. I have an EBV-confirmed onset. I had at the time gallbladder involvement, not stones, but sludge (like mud, really). i had several attacks in the following months, culminating with the mother of all gallbladdr attacks which sent me in the hospital for 2weeks. I am not sure when I was started on proton pump inhibitors but it was around that time, and I have not been able to get off them, most recently having increasing problems which are likely lead me to the expensive drugs. I am a bit curious about what a stomach biopsy would reveal. i have been tested for serum coxsackie B in the past and I had 2 strains, at lowish titers.

Merci Kati ! Je suis déjã traductrice bénévole pour MillionsMissing Canada, j'ai commencé il y a quelques jours. Si je peux aider à autre chose sans me rendre plus malade, ça me fera plaisir !

I tried 3 different kids of proton pump inhibitors myself and they all made me dangerously sick. I had severe gastric pain and constant watery diarrhea from them. Are you sure they are not part of the problem ?

 

[Kati]

Merci Kati ! Je suis déjã traductrice bénévole pour MillionsMissing Canada, j'ai commencé il y a quelques jours. Si je peux aider à autre chose sans me rendre plus malade, ça me fera plaisir !

I tried 3 different kids of proton pump inhibitors myself and they all made me dangerously sick. I had severe gastric pain and constant watery diarrhea from them. Are you sure they are not part of the problem ?

Hi @Dechi, I definitely have GERD (gastro-oesophagial reflux disease) and I have tried a few time to wean off these meds early on.
We are all different in terms of symptoms and particular issues, and in my case, I need these meds, probably needing something stronger as my symptoms ressurfaced in the last 6 months or so. (To the point of getting a heart test to rule out cardiac related chest pain)

Merci d'être traductrice pour #MillionsMissing, je suis à l'autre bout du pays depuis 23 ans maintenant et je perds mon français, surtout les expressions.

 

[Dechi]

@Kati ça me fait plaisir, vraiment. J'ai l'impression de servir à quelque chose... Ton français est excellent. Si tu veux pratiquer, il y a des groupe d'EM francophones sur fb.

I also have GERD but I don't take any meds for it, I just get checked every 6 months to make sure it doesn't get worse. I hope you find a way to get it under control.

 

[Hip]

I didn't know anything about this before, thanks for posting. I wonder if this would explain the virus I have at the moment and get from time to time. It started with lots of pain in my gut but also I have a sore throat and lots of body aches/pains and almost zero energy.

In his Invest in ME London Conference presentations, Dr John Chia describes some of the prodromal (first) symptoms of acute enterovirus infections.

A short gastrointestinal illness can be the first symptom of an acute enterovirus infection, often with pain or tenderness in the left lower quadrant and or right lower quadrant of the abdomen.

Enterovirus infections can also begin with a herpangina sore throat, which is a particular type of sore throat, with a characteristic appearance (an inflamed red area at the back of the soft palette, with blisters and ulcers, looking like this). Herpangina is nearly always caused by enteroviruses, so having herpangina in the weeks or months just before your ME/CFS symptoms began is good evidence of an enterovirus trigger for your ME/CFS.

In the acute infection stage, Coxsackievirus B can cause pleurodynia = severe chest pain in the muscles between the ribs, or in the diaphragm.

Other acute enterovirus symptom are detailed here.


As Dr Hyde mentions in his video, other good evidence for enterovirus infection is the incubation period. The incubation period of an infectious pathogen is defined as the time between catching the pathogen, and the appearance of the first symptoms.

For coxsackievirus B, the incubation period is 3 to 5 days, for echovirus the incubation period is 2 to 14 days.

So if you happen to know when you caught your infection and when the first symptoms appeared (in the story that Dr Hyde gives above, it was during the white water rafting trip that all these doctors caught their virus, and the first symptoms appeared 3 or 4 days later), then that can be a good clue to which virus you might have caught.

If you compare this to the incubation period of Epstein-Barr virus, it takes 4 to 8 weeks for the first symptoms of EBV to appear. So a much longer incubation period.

 

[Dolphin]

Why hasnt hydes work been thoroughly investigated?

I think Dr Hyde's work would have had more influence if he had published more.
He has published virtually no research papers in the last 20 years.

As I understand it, you pay the Nightingale Research Foundation to see him:
http://www.nightingale.ca/index.php?target=researchpatients

In such a scenario I think there is an onus on them and him to publish more. Making statements in videos and at meetings isn't the best way to influence a research field.

I don't think he has had much to add. His theories are not his alone (on enterovirus + SPECT etc.).

If he has no intention of doing research, I don't know why the money is going through a research foundation.

Publishing data, even if the initial ideas were not his own, would be useful.

 

[Forbin]

Enterovirus infections can also begin with a herpangina sore throat, which is a particular type of sore throat, with a characteristic appearance (an inflamed red throat at the back of the soft palette, with blisters and ulcers, looking like this). Herpangina is nearly always caused by enteroviruses, so having herpangina in the weeks or months just before your ME/CFS symptoms began is good evidence of an enterovirus trigger for your ME/CFS.

Well, this is consistent with what preceded my onset. Blood and CSF tests shortly following onset did not indicate any particular viral infection (though WBC's were elevated), but this was a long time ago and I'm not sure that scanning for enteroviruses would have been routine. A gastric biopsy was certainly not done.

It does sort of beg the question, though, of whether some kind of chronic enterovirus infection is perpetuating ME, or if it is simply an artifact of an initial infection which triggered some other chronic process.

Enteroviruses might not be the only thing that could trigger such a process.

 

[Hip]

Enteroviruses might not be the only thing that could trigger such a process.

I think even Dr Chia does not believe enteroviruses are the only cause of ME/CFS; but they may well be the most common cause. It's also possible that enteroviruses might cause a type of ME/CFS which is more difficult to recover from.

If you look at Epstein-Barr virus, this study found that in 9% of cases of mononucleosis / glandular fever, ME/CFS appeared afterwards, accounting for around 3,100 new cases of ME/CFS in England and Wales per year.

So it seems clear that EBV can trigger ME/CFS (although I have not seen the full paper, and am not sure if in that study they checked to see whether the mononucleosis was caused by EBV; because more rarely, mono can be caused by cytomegalovirus).


Now, as a rough estimate, I calculated that in England and Wales, you will get around 14,500 new cases of ME/CFS each year in total (my incidence calculation given below).

So from these figures, we can say that roughly 20% of new ME/CFS cases are triggered by Epstein-Barr virus, and the remaining 80% by other causes. I suspect the bulk of that 80% will be due to enterovirus, with a minor role for other ME/CFS-associated infections such as Chlamydia pneumoniae and parvovirus B19, or triggers such as vaccination.

Spoiler: Incidence Calculation

According to this Norwegian study, the yearly incidence of ME/CFS is 25.8 new cases per 100,000 persons. So in England and Wales (population = 56 million), you'd expect the yearly number of new ME/CFS cases to be 25.8 x 56,000,000 / 100,000 = 14,448

 

[halcyon]

If he has no intention of doing research, I don't know why the money is going through a research foundation.

Yeah, good point. My impression was that the foundation was largely defunct at this point.

Publishing data, even if the initial ideas were not his own, would be useful.

You never know, perhaps he has tried and has had papers rejected etc.

 

[bertiedog]

Enterovirus infections can also begin with a herpangina sore throat, which is a particular type of sore throat, with a characteristic appearance (an inflamed red area at the back of the soft palette, with blisters and ulcers, looking like this). Herpangina is nearly always caused by enteroviruses, so having herpangina in the weeks or months just before your ME/CFS symptoms began is good evidence of an enterovirus trigger for your ME/CFS.

Definitely my throat looks similar to some of those in the images you posted. My ME/CFS came about in stages, first off I developed severe vertigo attacks and migraines in 1979 after 2 weeks of what I thought was flu and these continued through the 80s, 90s but in between I had good energy until 1996 when I started to get different sorts of "attacks" which would be more similar to what I get now. Lots of body aches, severe sore throats and almost zero energy plus I caught very bad GI bugs like Campylbactor. By 2000 I was given the diagnosis of CFS.

Pam

 

[Biarritz13]

A new one:

 

[Forbin]

It thought would be interesting to find the story in TIME Magazine that Dr. Hyde mentions. I tried searching for a TIME Magazine story from 1955 -1960 that gave any mention of the Royal Free outbreak, or of it being hysteria, but I came up empty. For all I know, I was searching in the wrong decade.

ETA:

I think I found it:

I believe Dr. Hyde is most likely referring to an article which was printed in TIME in response to a paper published in the January, 1970 issue of the BMJ. This was the (in)famous paper by McEvedy and Beard which claimed that the Royal Free outbreak (and several others) were "mass hysteria."
https://www.jstor.org/stable/20379056?seq=1#page_scan_tab_contents

A TIME Magazine article about the Royal Free outbreak appeared later that month.
http://content.time.com/time/magazine/article/0,9171,878745,00.html

 

[Hip]

Here is the transcript of this second Byron Hyde video entitled Symptoms of ME:

The core symptoms in the 1905 epidemic were described in Ivar Wickman's book in 1907.

I'll read them, because they're very interesting: fleeting palsy or weakness, sometimes with shakings or tremors; pain syndromes and malaise, including headaches and head pain; nausea and gastric symptoms was the third; the fourth he described was tenderness of muscles resembling influenza; and the fifth was cognitive psychic dysfunction; the sixth was subnormal temperatures and difficulty with cold and heat perception; transient aphasia (difficulty in saying words); and bladder symptoms, particularly what we would describe today as interstitial cystitis, or painful sex.

And this is a question that almost no doctors ask women with ME: "what is your sex life life like?" They don't do it, they are frightened to ask. And a lot of these women have interstitial cystitis, which is not an infection, but a viral injury of the wall of the bladder. The others were: hypertonus; loss of elasticity of muscles and the arteries; paresthesias (which are abnormal sensations, burning or prickling); and sweats.

And these are probably the best description of any any patient today. Now all patients do not have all of these things, but these can occur in one patient, or in several patients. So it's very important that Wickman was able to describe this in 1907 in his book.

The shifts in insight in ME and CFS are quite critical to patients' health. For instance the first major shift occurred in the 1932 epidemic in Los Angeles County General Hospital. At that time there was a war going on between the doctor describing and who said it was polio, and the head of the Health Institute for Washington who said this is not polio, and they fought hands and dogs about this.

But the biggest fight was generated at that time by the insurance industry, who if this disease was caused by the immunization that they gave the doctors and nurses at that epidemic, they were going to end up paying millions and millions of dollars in 1932.

Well it was settled in 1938 with the equivalent of the 192 people who had been injured in that ME epidemic; it was settled by an equivalent amount of money that would buy two houses in Hollywood today, so you're looking at about a five million dollar settlement equivalent at that time, and ever since then, the insurance industry has caused the major shift in understanding of ME and CFS.

And this was seen again in the 1950s epidemic at the London Royal Free Hospital: at that time, a doctor doing his PhD at Oxford went for half a day to study these patients, and then wrote his thesis over half a day on that.

Within one or two days of publishing his thesis with Oxford, it appeared on the front page of Time magazine in the United States, something that has never happened, showing that this was mass hysteria.

And this is probably the most tragic thing that has happened to CFS and ME patients. Ever since that article on the front page of Time magazine; doctors read Time magazine at that time, doctors want something sometimes to laugh at, and here was mass hysteria at its greatest point. And this has been the biggest terrible shift in understanding of ME, particularly because most doctors who even know the name, considered it to be mass hysteria.

There is no way that you can publish a PhD thesis, and then two days, later having an unknown writer get this onto the front page of Time magazine, unless the insurance industry put it there.

The exclusion disorders of chronic fatigue syndrome, more so than ME, are really important. For instance, I've just seen seven patients over the last two days for the Dutch ME association, and the very first patients was not a me not chronic fatigue syndrome but a wonderfully terrible disease called Ehlers-Danlos syndrome.

Now Ehlers-Danlos syndrome: there's at least 11 forms of it. You die at birth in some of them. Others of these Ehlers-Danlos syndrome only occur when the patient is somewhere between 16 and 22 years old, often immediately after a viral infection, or an immunization. But sometimes they just appear out of the blue; but usually it's after a viral infection. And Ehlers-Danlos syndrome is very easy to diagnose: all you have to do is ask these patients to: "stick out your tongue, and can you touch your tongue to your nose".

Now most people can't (most adults can't anyway, some children can, but adults don't have that ability). The other thing is to be able to take your little finger, and turn it right up like, this without hurting yourself, which I can't do. Or taking your thumb, and pushing it down to your forearm. Or putting out your arms, and instead of having this kind of angle here as most people, the arm actually bends backwards at the elbow. Or looking at the knuckles: they're bigger; they're bigger because their fingers keep bending the wrong way.

So this is Ehlers-Danlos syndrome, and what it is, is a fascinating injury to the actual fibers, the collagen fibers in the body, which give the body's muscles and arteries their elasticity, and their longevity. And these are broken down. And you can actually look at them on an electron microscope, and they're called flowers, collagen flowers. That is just 1 of about 20 misdiagnoses of chronic fatigue syndrome, and they are all fascinating.

Are there other diseases that you can easily confuse with ME or chronic fatigue syndrome? Yeah, unfortunately there are many of them. One of the most easy to do, is to understand first of all, that the primary symptom of both ME and CFS patients is central nervous deregulation, which causes literally all of the symptomology of these patients.

Now, one of the easiest things is clotting factors and dysfunctions. A lot of people have clotting factors functions, which increase with age, and this can be easily solved by just asking for venous and arterial clotting factors, and if it comes back positive, you know that these people are going to have minor clots going to their brain on a regular basis, gradually causing central nervous deregulation.

Another common one which again is missed is the various rheumatoid and arthritic conditions which have central nervous system disturbance. And again all you have to do is notice the ANA, which is a very easy done test, or the rheumatoid profile, which can be done inexpensively, and you can pick these up.

But there are many, many others. For instance, if you actually look at the medications a lot of patients are on, the side effects of a lot of medications can cause typical ME and CFS symptoms, and you have to go through the side effects of all the medications. Some of the patients taking prescriptions don't know these side effects. So medication side effects is a major, major problem. And I think that's just 3 things which are easily looked at, easily checked. And so we could go on for hours from there.

 

[Hip]

It thought would be interesting to find the story in TIME Magazine that Dr. Hyde mentions. I tried searching for a TIME Magazine story from 1955 -1960 that gave any mention of the Royal Free outbreak, or of it being hysteria, but I came up empty.

If Dr Hyde is correct in saying that the PhD student actually went to study the patients during the Royal Free Hospital outbreak itself, this I am guessing this must have been in either 1955 or 1956. The outbreak started on 13th July 1955, but I believe continued until 1956.

Looking at the Time magazine archives, you can see pictures of most (but not all) of the front covers for 1955 and 1956 (although the student's thesis may have been published slightly later, in 1957 or 1958 say).

 

[Forbin]

If Dr Hyde is correct in saying that the PhD student actually went to study the patients during the Royal Free Hospital outbreak itself, this I am guessing this must have been in either 1955 or 1956. The outbreak started on 13th July 1955, but I believe continued until 1956.

Looking at the Time magazine archives, you can see pictures of most (but not all) of the front covers for 1955 and 1956 (although the student's thesis may have been published slightly later, in 1957 or 1958 say).

I did look at all the U.S. TIME covers between 1955 and 1960 and there was nothing on any of them that related to this story. Back then, the cover of TIME was devoted to one subject, usually an important personality, and, unlike magazines today, there were usually no other headlines. It's clear that this would not be the kind of story to make the cover of TIME back then. Whether the cover was different in, say, Canada, I don't know.

I did find this in a 2007 paper by Malcolm Hooper, which might explain how someone working on a PhD could study "patients" at Royal Free Hospital for only "half a day" before writing a thesis.

The contrasting view of myalgic encephalomyelitis as mass hysteria originated with the work of Beard and McEvedy in 1970. It is a matter of record, since both authors are now dead, that Byron Hyde visited McEvedy to discuss his thesis and to meet people involved in the Royal Free outbreak. McEvedy stated that he did not examine any patients and undertook only the most cursory examination of medical records.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1994528/

This quote from Byron Hyde's "Little Red Book" confirms that the McEvedy wrote his 1970 article in the BMJ as a PhD thesis.

So, in 1970 when McEvedy used the London Royal Free Hospital epidemics as a basis of his PhD thesis it was understandable, working on a similar theory as his tutor, there was no need to actually examine anyone or for that matter, even take a history of any of the actual Royal Free patients.
http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf

I think the confusion stems from Dr. Hyde's use of the phrase "at that time" in connecting the Royal Free outbreak and the writing of the paper about mass hysteria.

Also, I just realized that Dr. Hyde does not say "the cover" of TIME magazine. He says, "the front page." The front page could easily be the "table of contents."