What evidence is there that ME/CFS is more autoimmune than chronic infection?

[barbc56]

I wish that dr. Mikovits could join the debate. Has she been invited to the forum? I am looking to hear her tell about why she thinks ME is some sort of retrovirus. I wonder if she can back that claim up at all..

I would think she has explained elsewhere in interviews and her book.

Barb

 

[barbc56]

@Jonathan Edwards

Are there any science based medical conditions where chronic infection is present without something that would show up in a medical tests or on an autopsy?

If this has been brought up just point me in the right direction.. Three related threads as well as getting off topic has been so confusing as to who said what or what has even been said.

If you need a break from this thread or busy elsewhere, not a problem as others will probably chime in.

Thanks.
Barb

 

[Jonathan Edwards]

Umm, the NHS guidelines for ME?

That's what you are told to do if you think you need to. It doesn't mean anyone ever does it.

I mean that those cytokines are not switches that turn on a specific state. Biological systems are complex and dirty (analog). It is really just some statistical approximations trying to demarcate different states, or syndromes.

You are thinking black and white; turn on abc and you get sickness behaviour (or ME). It is too simple a model to explain a complex syndrome like ME.

In other words, ME is not simply sickness behaviour.

Good way of putting it.

 

[msf]

Then the question is, if the ME doctors you know don't believe Lyme is the cause of a significant proportion of ME cases, why aren't they excluding those cases? If, as said earlier, these doctors do not exclude Lyme because they do not see any cases of it, I would suggest that is because they are ME doctors, and the Lyme cases have already been excluded by GPs, who know as much about Lyme (almost nothing) and have same restrictions placed on them in terms of testing as the ME doctors, so it's not very surprising that they don't see many cases.

 

[Jonathan Edwards]

You are talking reporting rates which are hardly directly correlated to actual illness rates. Awareness is a big issue with regard to reported rates of a poorly-understood and often misdiagnosed condition.

These rates represent all cases identified by primary care physicians, trained to know what to look for, going through their total patient population cohorts. This is primary epidemiological trawling, not reporting rates through secondary referral. The cases identified were then screened for three different sets of criteria (including Fukuda and Canadian I think) and the prevalence rates for each set of criteria documented.

 

[msf]

If they were really screened for the Canadian criteria, Lyme cases would have been excluded.

 

[MeSci]

YOu may be willing to bet, but do we have any evidence? Why is ME not more prevalent in tic infested areas in the UK? I have had tic bites in other countries but although I am an avid naturalist I have never met a tic in England. They say you need to go to the New Forest or somewhere, but the Royal Free is more in the middle of town!!

My cats had several ticks where I lived previously - a Cornish village. I sometimes had to remove them. Two of the cats I then had, one of whom definitely had a tick at least once, went on to develop mystery illnesses which may have shortened their lives. The vet never figured out what was wrong with either of them. Perhaps coincidentally, that's where I was living when I developed ME. I never found a tick on me as far as I recall, but my rural explorations would certainly have exposed me to human ticks if there were any.

All circumstantial, I know.

 

[msf]

Just so you know, MeSci, there are no human ticks, the one that liked your cat's blood would also have liked your blood.

 

[MeSci]

YOu may be willing to bet, but do we have any evidence? Why is ME not more prevalent in tic infested areas in the UK? I have had tic bites in other countries but although I am an avid naturalist I have never met a tic in England. They say you need to go to the New Forest or somewhere, but the Royal Free is more in the middle of town!!

A quick internet search finds this UK advice document

and this page about Lyme epidemiology in the UK.

 

[Jonathan Edwards]

@Jonathan Edwards

Are there any science based medical conditions where chronic infection is present without something that would show up in a medical tests or on an autopsy?

If this has been brought up just point me in the right direction.. Three related threads as well as getting off topic has been so confusing as to who said what or what has even been said.

If you need a break from this thread or busy elsewhere, not a problem as others will probably chime in.

Thanks.
Barb

I think part of the problem is that if they do not show up on a medical test then we would not know. However, the majority of chronic infections are either controlled by the immune system in the end and resolve or progress to some sort of structural damage - as in TB, syphilis, HIV, brucellosis etc. There are some exceptions. There are carriage states in which organisms live, mostly in tissue surfaces like gut or skin or nail or gall bladder, without producing much if any symptoms and without getting more or less over many years (typhoid, various fungi). There is also the rather unique situation of latent herpes virus in nerve - zoster or simplex - with episodic outbreaks of skin vesicles. But these produce clear structural changes and virus can be seen under electronmicroscopy (maybe the only absolutely reliable proof).

Enteroviruses seem to be present in gut lining in quite a lot of normal people much of the time and I agree that it is possible that in ME there is some higher rate of carriage PLUS some unusual response. I am a bit doubtful about this being due to cytokines affecting the vagus because to get cytokine you usually need some sort of cellular change in the tissue like some macrophage activation. Dr Chia's biopsies look extremely normal in structure.

I am sceptical that micro-organisms will sit for long periods in brain tissue and cause symptoms but no cellular change. You would at least expect some clustering of microglia. Maybe nobody has looked for this properly. But I think there is still a strong argument against. Micro-organisms do not care about tissue boundaries. If they are in vagal nuclei they will be happy to hop across to other structures. If there was a chronic infection in brain stem one would expect in at least 1% of cases for the organism to spread to something vital and cause coma. Yet there are supposed to be 200,000 PWME in the UK and we have not had 2000 reports of them going in to coma. It is the flea and thunderbolt argument again - or maybe you cannot expect to take a bull into a china shop and not have one saucer broken.

I a happy to be proven wrong but my stance is scepticism ALL ROUND and I am very sceptical about the proposals suggested.

 

[MeSci]

I don't think Lyme disease causing ME makes much sense epidemiologically. If it did, surely the endemic Borrelia areas in Central and Eastern Europe would have epidemic levels of ME compared to places like the UK, Ireland, Australia, parts of US etc. It's not like every second person in places like Austria is keeled over from ME.

Maybe they take more precautions where borreliosis is known to be a major risk?

 

[Jonathan Edwards]

I very much like the idea of having virologists and bacteriologists join the debate. However, I would point out that I am not specifically an autoimmune enthusiast here. In fact I am pretty sceptical of any suggestion that ME is mostly autoimmune. If you look back at my 'MEs' thread I think you will find I suggested six routes into 'CFS', three of which were autoimmune and three not. Of the ones I am pretty sure I have met two are autoimmune and one autoinflammatory, but then I dealt with those sorts of diseases. I have no idea if these are a significant proportion of the total.

What might be an idea would be to find virologists or bacteriologists who, like me, never had an ME practice. In fact we already have at least two pathologists on PR (and another physician and a surgeon for that matter). As far as I can see we tend to have fairly similar views - so maybe the fireworks might not materialise!

 

[msf]

If you really need to see a tick to believe in their ubiquitousness in the UK, Prof. Edwards, I would suggest getting really close to a deer.

 

[heapsreal]

@barbc56
there are chronic forms of meningitis that probably arent diagnosed as one has to have a lumber puncture . Generally they are a low grade form and people are told they have migraines etc etc and treated symptomatically.

mollaret's meningitis is a chronic infection/condition from herpes 1 or 2 and varicella zoster, probably all the other herpes viruses. It seems testing is limited unless one is very severe in hospital and a lumbar puncture done.

I mention that as an example as im sure theres more but limited to effective testing.

 

[duncan]

Jonathan, you mentioned you were skeptical about mico-organisms that sit in tissues and brains and cause symptoms but no cellular change. I'm not sure what that means; could you please explain? How would Syphilis, another spirochetal bacteria that is fond of tissue and brains, fit into that observation?

 

[duncan]

Sidereal, yes, the diagnostic problems cut both ways, and the result is problems for patients on both side of the aisle. There sometimes may be unscrupulous mercenaries that promote themselves as ILADS, or other alternative solution providers, and take advantage of people, some of whom may never have had Lyme. Agreed. I would suggest, however, that these are the exception to the rule.

The thing is, if the system weren't broken by a small group of individuals to begin with, and maintained more or less by that same group, those few scavengers wouldn't have a market to practice in. So Lyme advocates are forced to police both sides of the aisle, all the while trying to redefine the entire approach - from diagnostics thru treatment - to a hugely disputed and under-reported disease. And all the while potentially straddling several (sometimes dodgy) diagnoses, including ME of course, but also other TBDs like babesia and bartonella.

I apologize for the off-topic sidebar.

 

[Sidereal]

We don't know how many people have gone into a coma and died from ME-like illnesses because a) it's a psychosomatic diagnosis and b) it's a diagnosis of exclusion meaning that if there were indeed a virus and it starts to cause really serious trouble, the patient's rapidly deteriorating fatal condition will just be recorded as encephalitis or a shoulder shrug, never ME. Since ME is not a positive diagnosis you can look for on a post-mortem, no one is going to later say "oh look, he was one of the small percentage of people who got a really aggressive form of ME and died". If a patient's condition instead turns into this slow progressing subacute encephalopathy that kills you decades later, they say "oh, it's CFS, you need to see a psychiatrist and the fatigue clinic". If a long-term "CFS" patient develops neurological signs, again they will be re-diagnosed with something else like atypical MS, conversion disorder, anything to maintain the notion that ME is just fatigue and never serious or fatal. If they die, the cause of death will be claimed to be a kidney infection or something. So, as it stands, the game is rigged against us finding out how severe/fatal this thing can get.

 

[Sidereal]

There is a type of autoimmune encephalitis called anti-NMDA receptor encephalitis. Up until a few years ago when it was discovered that there is an antibody attacking the NMDA receptor causing psychotic symptoms, seizures and severe dysautonomia, if you got this condition you were told you had schizophrenia, a similar type of trash heap heterogeneous diagnosis as CFS. If your condition rapidly deteriorated (as it does in most cases on anti-NMDAR encephalitis), you ended up in ICU in a coma and died re-diagnosed with "some kind of encephalitis". If you happened to survive (some do), you now ended up with lifelong psychotic symptoms and a psych dx of schizophrenia. Just like in ME, when you give these patients a lumbar puncture, MRI etc. etc. it's all clear, no overt sign of brain damage, no sign of immune activation, nothing.

 

[duncan]

A book was written by a woman who had this.

Neuroborreliosis can do the same thing: Present with LP findings that seem hushed, that are not overtly positive in the common areas.

 

[Sidereal]

A book was written by a woman who had this.

A good book at that. I remember thinking how similar her onset was to many of us here. An apparent viral infection, just not feeling right, dizziness, confusion, dysautonomia, numbness/paresthesia in hands, behavioural changes. Told it was "mono" by her doctor. Then, as the condition progressed, everything was interpreted in a psychiatric way, told she was under stress and attention seeking by the elderly male neurologist etc etc