Chia or KDM?

[burgeo10]

@Learner1 Thank you for clarifying that info for me. Now to find a lab and a doctor that will oversee these tests

@Hip with regards to Dr Chia's enterovirus tests, I called his office yesterday and they said they used ARUP labs in Utah but they did not think they would take samples from abroad. I contacted ARUP and they said they could as long as my doctor contacted them and sorted it out - so thats today's project!

 

[Hip]

I contacted ARUP and they said they could as long as my doctor contacted them and sorted it out - so thats today's project!

That's good news. So it sounds like ARUP will not allow patients from abroad to send in samples on their own, but they will accept if samples it the patient's doctor organizes it.

The tests are expensive though, so be warned: each one is around the $440 mark the last time I enquired, so that's a total of nearly $900 for both CVB and echovirus.

 

[Learner1]

I'd really like to know the herpesvirus tests and interpretations used by other ME/CFS clinician-researchers such as Dr Daniel Peterson, Dr Nancy Klimas, Dr Charles Lapp, Dr Andreas Kogelnik, etc, but have not been able to find anything via Google searching.

PCR may work better for herpesvirus, but I have not been able to find much info on it. I'd like to know more about how PCR is interpreted in ME/CFS patients with herpesvirus infections, but can't find any good articles or published studies on what PCR tests are used by ME/CFS clinician-researchers, and how they are interpreted.

My doctor is currently part of the Stanford Center of Excellence and was until recently a partner of Kogelnik's. The information I gave you reflects his interpretation.

In my case, he felt the LabCorp PCR test was definitive, especially when linked with my very high VCA IgG. He said it was an uncommon presentation of EBV, but that I definitely had it, and it showed how dysfunctional my immune system is.

As we've discussed previously, there are likely more variations than Lerner's abortive replication and the deficient response theory.

 

[Hip]

My doctor is currently part of the Stanford Center of Excellence and was until recently a partner of Kogelnik's.

Does your doctor have anything published, or any articles or video presentations about his use of PCR for diagnosis? I am at the moment trying to find more info about the tests used by ME/CFS clinician-researchers, to put in the roadmap document.

The stuff I am looking for is studies or articles in which the doctor in effect says: "I use test X to diagnose infection with pathogen Y, and when the test result has a value of Z or higher, that's when I diagnose a chronic infection with Y, and my studies or clinical work has shown that treatment T is effective for ME/CFS linked to this infection".

In the roadmap, the tests are linked to proven treatments that may be useful if the test is positive.

For people like Chia, Lerner and Montoya, I have been able to find published statements that say the above. I try to keep the roadmap evidence-based, and with every test and treatment in the roadmap backed up by a published study, article or video presentation. But unfortunately I have not been able to find published statements from most other ME/CFS clinician-researchers.

As we've discussed previously, there are likely more variations than Lerner's abortive replication and the deficient response theory.

Agreed that new theories may arise in future, but at the moment this is what we have. We may even find in future that ME/CFS is nothing to do with infection, and that the elevated titers to viruses are just red herrings. I personally don't think that the case, but I am certainly open to non-viral theories of ME/CFS.

I had not come across the paper you mentioned earlier, showing a deficiency of EBNA-1 antibodies found in 76% of ME/CFS patients. However, I would not call that paper a theory of ME/CFS; it's just a finding at this stage.

There is a good article by Cort here about the paper.

 

[Learner1]

From the research and evidence I've seen, Epstein Barr is a multi-headed beast. It lurks in the system, waits for a weakness, and attacks. It has many ways of showing up, and it can lead to autoimmune antibodies and cancer.

Many doctors have underestimated it. It has been underestimated in making ME/CFS patients ill.

I don't need you to question my doctor and insist he provide published studies. He seems to become of a very few doctors helping patients make dramatic changes for the better. I went to the OMF Symposium, and was surprised that much of what the researchers shared, my doctor had already told me, so I know he's up on the latest research.

It seems quite evident that there are many different combinations of lab results which indicate that Epstein Barr is there, making us sick. It can make us quite sick, and it is worth treating.

Finding out that I had it and treating it has made a dramatic difference in my functioning. I don't need a published study on other patients to tell me if my doctor or I are doing the right thing.

 

[Learner1]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3782265/#!po=13.2000

 

[Hip]

I don't need you to question my doctor and insist he provide published studies.

I am not questioning his decision or clinical judgement, nor insisting that he engage in research and publishing studies. Not all doctors are inclined that way. Some just like to focus on clinical work; others like to engage in research as well.

I am saying that I look for evidence before putting anything in the roadmap, so that it becomes an evidence-based document, rather than a document in which contains statements such "a friend of a friend to me that their doctor uses this test".

 

[Learner1]

It doesn't seem like there are hard and fast rules, and from the discussion I've seen, too many patients are getting too conservative interpretation of lab results, if they even get the right tests at all, and smoldering cases of EBV are missed, leaving people ill when they could benefit from treatment.

What should be in your roadmap is the advice to get a complete set of EBV testing, including EBNA, EA, and VCA IgM and IgG, along with a PCR test. There are several scenarios with these tests where a positive diagnosis can be made that deviate from accepted wosdin and that research backs up.

 

[Hip]

What should be in your roadmap is the advice to get a complete set of EBV testing, including EBNA, EA, and VCA IgM and IgG, along with a PCR test.

If you can provide documented details of the appropriateness of such a testing for ME/CFS patients from an ME/CFS expert, then I can include it. I need to provide reference links in the roadmap to studies, articles or videos which back up every statement made in the roadmap.

As an example of a reference link, this document by Dr Lerner details his testing protocol: ME/CFS Treatment Resource Guide for Practitioners, see page 4.

Dr Peterson has also provided a similar document: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management: The Basics and Beyond.

However, in Peterson's case, his document is just too vague regarding the tests used, so I have not been able to make use of it. He does use PCR for herpesviruses, but does not specify which type of PCR, nor the lab he uses, nor the threshold at which he considers a positive result for active infection (in the case of quantitative PCR).

Peterson is also not very clear in this document whether the PCR is for serum, or for CSF (he is one of the few ME/CFS doctors that does test the CSF).



One of the original purposes and motivations for the roadmap was a political one: lots of doctors believe ME/CFS is "all in the mind," and would thus not consider anything like antiviral treatment. What the roadmap shows is published evidence that viral infections may be present in ME/CFS, and good evidence that treatment of these infections can lead to major improvements in ME/CFS.

The idea is that any medic who happens to read the roadmap may reconsider his "all in the mind" views as a result of the evidence in the roadmap. That's why the evidence has to be solid, and based on good published studies wherever possible.

From the patient perspective, it is also irresponsible to fill the roadmap full of speculative unproven ideas, which you seem to be advocating. Many patients can barely afford testing, or some of the expensive treatments which are involved, such as Valcyte or Valtrex. So you don't want to send patients on a wild goose chase, trying out some speculative treatment which has no proven record of benefit.

Yes, if you have good insurance in the US, your insurer may indulge you in expensive speculative treatments; but if you have not got good insurance, or you live in a country with socialized heath care, then it is likely you will have to pay for the treatments yourself, and you would thus probably not want to use you money on unproven treatments.


Anyway, this discussion would be best moved to the thread about the roadmap.

 

[Tammy]

From the research and evidence I've seen, Epstein Barr is a multi-headed beast. It lurks in the system, waits for a weakness, and attacks.

Many doctors have underestimated it. It has been underestimated in making ME/CFS patients ill.

Agree 100%

 

[Learner1]

From the patient perspective, it is also irresponsible to fill the roadmap full of speculative unproven ideas, which you seem to be advocating. Many patients can barely afford testing, or some of the expensive treatments which are involved, such as Valcyte or Valtrex. So you don't want to send patients on a wild goose chase, trying out some speculative treatment which has no proven record of benefit.

Yes, if you have good insurance in the US, your insurer may indulge you in expensive speculative treatments; but if you have not got good insurance, or you live in a country with socialized heath care, then it is likely you will have to pay for the treatments yourself, and you would thus probably not want to use you money on unproven treatments.

@Hip Unfortunately, we are years from having solid answers to much of this. There has not been sufficient research on much of this, which is why we are in the difficult situation we're in.

While I admire the effort you've put into your roadmap, I don't feel its a complete document, and I find it narrowly focused, missing entire subject matter areas, and inadequate to produce a cure. I have seen other diagnostics and treatment modalities to be quite helpful, and honestly, no such tool could be a comprehensive, high quality resource given what is known today.

None of us has all the answers, and it is indeed irresponsible to represent your view as the only correct and comprehensive one may do some members here a disservice.

The best we can hope for today is to bring in the resources and knowledge from our eclectic experiences and try to make the best sense of it we can and to pursue treatments based on our own situations that we think that will be helpful. We are a heterogeneous set of patients, with discrete (and even overlspping) subsets, and what may help some of us most likely will not help all of us.

As for insurance in the US, they certainly do not indulge speculative treatments - they're out to make a profit and don't want to gamble. Many diagnostics and treatments are limited or not allowed, so we end up paying out of pocket, on top of huge deductibles and copays for services you all get for free with socialized medicine, running to many thousands of $$ a year.

It's in everyone's interest to get the highest quality, most specific diagnoses they can, as early as possible, before they run out of money and resources, so they can get effective treatment, which raises the odds of recovery. Dragging along for years in the dark without knowing what's behind the illness is not a way to get well, especially as resources get thin.

So paying out of pocket for something that's an educated guess can be worth it. Or we can wait 30 years for the perfect answer.

 

[Hip]

While I admire the effort you've put into your roadmap, I don't feel its a complete document, and I find it narrowly focused, missing entire subject matter areas, and inadequate to produce a cure.

The roadmap is intended to be a beginner's guide to the main treatments used by renowned ME/CFS doctors, especially treatments with a proven high rate of success. The idea of it was to reduce the time it takes to ascend the learning curve of the basic ME/CFS treatments available. It's not intended to cover every possible treatment out there.

There is nothing to stop people from further exploring ME/CFS forums, blogs and books for more speculative and experimental treatment ideas which are highly anecdotal and unproven — I do this myself all the time. And indeed, that's what I would hope other people would do after getting acquainted with the basics. But when it comes to a new patient learning the ropes, I think it is best to give them the reliable proven fundamentals first, rather that throw some speculative and untested treatment ideas at them.

I am not aware of any major treatment with a proven track record that is not covered by the roadmap, though. If you know of one, please let me know.

 

[Learner1]

The roadmap is intended to be a beginner's guide to the main treatments used by renowned ME/CFS doctors, especially treatments with a proven high rate of success. The idea of it was to reduce the time it takes to ascend the learning curve of the basic ME/CFS treatments available. It's not intended to cover every possible treatment out there.

There is nothing to stop people from further exploring ME/CFS forums, blogs and books for more speculative and experimental treatment ideas which are highly anecdotal and unproven — I do this myself all the time. And indeed, that's what I would hope other people would do after getting acquainted with the basics. But when it comes to a new patient learning the ropes, I think it is best to give them the reliable proven fundamentals first, rather that throw some speculative and untested treatment ideas at them.

I am not aware of any major treatment with a proven track record that is not covered by the roadmap, though. If you know of one, please let me know.

I've brought them up to you, to be dismissed. I will PM you, however.

 

[Hip]

I've brought them up to you, to be dismissed.

Are you referring to ozone therapy? You did not provide any evidence of its efficacy. If you can provide an evidence base, then it can be included.

There are hundreds of therapies with little or no evidence base that could be included in the roadmap, and I expect most of them are lemons. The roadmap would be of little use if it just lists a series of treatments that are most likely ineffective. The idea of the roadmap is to guide people to good treatments that are known to work for for a good percentage of patients, rather than allow people to get lost in the maze of the hundreds of speculative and probably ineffective treatments.

ME/CFS forums themselves are a maze of speculative or experimental treatments; sadly, many new arrivals on these forums become confused and overwhelmed by this maze. But if a maze is what you want, and you want to explore experimental treatments, then just read the forums.

I already have concerns about some of the more dubious or speculative treatments presently listed in the roadmap, and am contemplating removing some stuff that has a poor evidence base, and a poor record of success. For example, Nexavir (Kutapressin) injections for herpesviruses I am thinking of removing, as the evidence supporting it seems poor, and I have never come across one person on this forum who benefitted from Nexavir.