Debates on ME in Dutch Parliament May 14; & Lyme May 15

[Sushi]

...I was in KDM'S office this morning and it was very busy with new patients, returning patients and also many in doing IV'S - they were mainly Belgian and Dutch a couple of French and two English as far as I could tell- none of them where the Dutch or English patients of his that I have met online here so we are not hearing their stories....

BTW he told me this morning that 95% of his patients are now testing positive for some type of bacterial infections - I guess not necessarily Lyme. He believes that genetic typing is important as that could explain why some people find it harder than others to 'clear' the infections. I think he said they had some research coming out on this soon - but don't take my word for it as I only had 3 hours sleep due to noisy boiler humming loudly all night at hotel.

Glad you made it there Justy--thanks for reporting in with only 3 hours sleep!

Yes, when I've been in KDM's office, most of the patients were not on forums--at least the English language forums. Though I have also met several members of this forum there--which was very nice. So, looks like it is true, we are only getting reports from a minority of patients who both have ME/CFS and are being aggressively treated.

When KDM said that 95% of his patients are now testing positive for some type of bacterial infections, this probably reflects the better testing that has become available in just the last year or two.

These are probably a group of very nasty and persistent intracellular infections that not only cause symptoms themselves but (as Sergio said above--[he is a medical student, BTW, gone from housebound to the classroom]):

interact with viruses and together wreck the immune system, causing inflammation, polyclonal lymphocytes proliferation and mimicry autoimmunity.

I don't think the finding that 90-95% of one specialist's patients are positive for one or more of a group of intracellular infections in any way questions the reality of ME/CFS--it just adds another clue as to where to look to discover the mechanisms that have wreaked such havoc on a percentage of our bodies. Even if this research pans out, it is not looking like a 1,2,3 simple chain of causation but like a cascade of very complex changes that, over time, lead to such physical and cognitive impairment.

I am one of those who is positive for at least one of these infections and I have begun to treat it, but there has been no guarantee or even suggestion that by beating down this infection, I will be well--it is more complex--but I am hoping that this is a step towards stopping the cascade. Other possible steps are presently under research, but as Rich has said, treating the terrain (in this case intracellular infections) is a necessary step.

Best,
Sushi

 

[justy]

Luckily I managed to get them to change my room tonight to a quitter one - I honestly could have gouged my ears out at one point!

Appt went very well, will post new thread to let everyone know at some point soon.

 

[Sushi]

A report of the Dutch Parliamentary debate on ME has just appeared in a Dutch newspaper. I used Google Chrome to read it and will paste in the translation from the Dutch--obviously a poor translation but, I hope, better than nothing! For anyone who can read the original, your corrections would be most welcome! The first quote is by Prof. De Meirleir, but there is much more in the article. You can see the full article here.

"However, ME is a neuro-immune disease in which there is the brains and other organs, there is inflammation, usually due to infections," said the Meirleir during the hearing. He pointed to "international consensus criteria" for ME in 2011, compiled by an international group of medical experts based on data from 110,000 patients. Request of the Canadian Government It shows that ME and CFS are two different diseases.

The main characteristic of ME Meirleir "exercise intolerance", named after exhaustion sometimes even the slightest physical or mental strain. "I know patients who had to keep the bed. Following a run to the bus stop for a week"...

And, from Dr. Hans Klein, a psychiatrist and researcher working at the University Medical Center Groningen who characterized ME:

... using PET scans, made in the context of recent research, as a "neuro-inflammatory condition." According to him, there are indications of a chronic inflammation of the brain. "At ME is the thalamus done," said Klein. "This is a major switching center for the coordination of emotions, behavior and feelings."

Klein argued that research in the Netherlands to ME "seriously behind" and "too much in the psychological angle is printed." On other knowledge about ME Dutch medical profession not have said Klein, while still some 5000 studies the disease have been made and our country approximately 30,000 ME patients counts.

And again from Prof. De Meirleir:

Kenny pointed to the example of Norway, where the Ministry of Health recently offered public apologies for the way ME patients were treated until recently. The occasion was the publication of a study in which promising results were reported for a potential treatment of ME.

According to Kenny is in proper diagnosis and treatment may be more than 70 percent of ME patients achieved an acceptable quality of life. "This allows them to work part-time or not. Again, In Belgium available for cognitive behavioral therapy.'s 7500 euros per patientWe can offer a much better quality of life for half the price. "

 

[Jemal]

Has the revolution started? I wonder.
A Dutch psychiatrist doing PET scans and finding inflammation. The hospital in Nijmegen, always promoting CBT, now doing trials with anti-inflammatory medication (they were recruiting a couple of months ago)?

We have a long way to go, but I think the balance is tipping.

 

[paolo]

Even if it is everything or not (Maybe it is for many, and not for others), it does exist, and it has a treatment. So if this percentage is officially recognized and confirmed (note that the LTT test has been approved by the FDA), then about an 80-95% of PWCFS would have a potential treatment available.

Now thta one year has passed since that debate in Dutch Parliament, has this statement (about connection between CFS and Lyme) been confirmed? Does KDM still defend his opinion that 95% of CFS patient are Late Lyme? How are his patients doing?

Million dollars questions, I know.

 

[Gijs]

I don't believe 95% of CFS patiënts have late stage Lyme, it is just like XMRV the next big HYPE! Still i don't see any publication of professor Meirleir. The LTT test doesn't prove Lyme at all. But the test is interesting because many people with CFS test positive. I would like to know why. Maybe this test can confirm ME

 

[paolo]

The LTT test doesn't prove Lyme at all.

Why do you say that? I'm trying to study this test. Do you know of any valuable pubblication about its use in Lyme? Thanks.

 

[Valentijn]

Why do you say that? I'm trying to study this test. Do you know of any valuable pubblication about its use in Lyme? Thanks.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/ indicates it's very accurate in detecting Lyme or the absence of Lyme in known serologically positive and negative samples.

Gijs flatly disagrees with any theory regarding ME/SEID which is not compatible with his own theories. I would not expect an explanation for his disagreement, based on extensive past experience.

 

[Cheshire]

What happened after these debates? Does someone know if it lead to anything, or had any tangible effect?

 

[paolo]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/ indicates it's very accurate in detecting Lyme or the absence of Lyme in known serologically positive and negative samples.

I know this publication, although I wasn't able to read it entirely, cause of my current brain fog...

I guess that the problem with this work -which is nevertheless remarkable- is that it can't say if LTT can differentiate Lyme from other infectious diseases. If you see, the control group is only of healthy persons or people with autoimmune diseases.

In other words the question is: is LTT positive also with other infections, both viral or bacterial? If the answer is yes, it can't detect borrelia in CFS population, which likely harbours many pathogens, as many studies have been demonstrating since the very beginning of CFS history.

Other question! Is the LTT in this study the same that KDM uses with his patients?

Thanks so much, Valentijn!

 

[Gijs]

Yes, it is the same test. The abnormal immunerespons from CFS patiënts with LTT test is very interesting. Why does our immune system respond to this test and not in healthy people? I would like to know. It doesn't prove Lyme but something else.

 

[Valentijn]

In other words the question is: is LTT positive also with other infections, both viral or bacterial? If the answer is yes, it can't detect borrelia in CFS population, which likely harbours many pathogens, as many studies have been demonstrating since the very beginning of CFS history.

It's not something I really know anything about, but I think it would be extremely unlikely that a test for a bacteria would cross-react with a virus. They are very different entities.

But in the discussion, the researchers say: "Of great importance are the selection and especially the dosage of the Borrelia test antigens. Lysate antigens, kindly provided by Seramun (Heidesee), were specially purified for the ELISA test and showed no positive reactions with negative control sera. Nevertheless, the presence of Borrelia-nonspecific proteins in the lysates that may cross-react with other bacterial species may be unavoidable."

Basically the test has cross-reactivity with other borrelia subspecies, which is probably a good thing, since it will pick up strains which can infect humans but are not detected using the CDC or other methods. But they're conceding that it is possible that it might cross-react with other non-Borrelia bacteria. This is also a problem with other tests - on the one which uses bands, some bands merely indicate certain characteristics of the bacteria, etc, which certainly are shared with other bacteria.

Other question! Is the LTT in this study the same that KDM uses with his patients?

Yes, though in a clinical setting the lab uses a result of 2 as the cut-off instead of 3. This makes some sense, as additional data can contribute to a clinical diagnosis, such as symptoms and other lab results which suggest the presence of Borrelia.

 

[paolo]

It's not something I really know anything about, but I think it would be extremely unlikely that a test for a bacteria would cross-react with a virus. They are very different entities.

But it's well known that EBV can cross-react with borrelia antibodies. In other words EBV and borrelia share some common antigens, even if they are two profoundly different organisms.

Nevertheless -scrolling down the article- I've found these considrations about my concern of cross-reactivity:

"Nevertheless, there are still gaps in the validation that we conducted. For instance, it was only possible in individual cases to examine patients with active syphilis (n = 3) or leptospirosis infection (n = 2) for potential cross reactivity. In these few cases, there was no evidence of such cross-reactivity in the Borrelia-LTT. Allergies, autoimmune diseases and acute, persistent and latent viral infections (including HIV, EBV, CMV, VZV) have now been excluded, by further investigations, as a possible cause of false-positive reactions (unpublished data)."

So they were able to exclud cross-reactivity with syphilis and leptospirosis, but only in a very small number of cases (3 for syphilis and 2 for leptospirosis). Too low this number of patients to have some genuine prove against cross-reactivity, I guess.

They also say that -according to unpublished data- it has been excluded false positivity in the following conditions:

• allergies;
• autoimmune diseases (which were also in the control group);
• acute and persistent HIV, EBV, CMV, VZV.

Sfortunately those data are unpublished, so that we can't say anything about them.

 

[Valentijn]

But it's well known that EBV can cross-react with borrelia antibodies. In other words EBV and borrelia share some common antigens, even if they are two profoundly different organisms.

Is this published somewhere?

 

[paolo]

Is this published somewhere?

You can read this paper:

http://cid.oxfordjournals.org/content/41/12/1826.full

Here it is an abstract:

"False-positive results of serological tests for Lyme disease have been reported in cases of recent primary infection with varicella-zoster virus, Epstein-Barr virus, and cytomegalovirus. We report the first association of false-positive results of serological testing for Lyme disease with infection due to another of the herpesviruses, herpes simplex virus (HSV) type 2."

On the other hand I know of a case in which borrelia induced transient EBV antibodies.

 

[Valentijn]

You can read this paper:

http://cid.oxfordjournals.org/content/41/12/1826.full

It sounds like this only happens during the early stage of either infection. Within weeks of symptom onset, there is some IgM cross-reactivity in ELISA testing, but that disappears.

There's also no indication that this happens with the Elispot-LTT, or other Lyme tests. Though it sounds like they don't know why the two cross-react on IGM in early stages, so it can't be ruled out that other tests cross-react at the same stage.

But needless to say, by the time an ME patient is getting diagnosed with Lyme or any other infection, they are well past the acute stage So I don't think IgM false-positives to EBV would generally be relevant in the case of ME/SEID, except potentially very shortly after onset when none of us are being tested for anything useful yet anyhow.

 

[NK17]

@paolo and @Valentijn IGeneX Western Blot labs results states under LIMITATION: (…) Some viral antibodies cross-react with 31, 41, 83-93 kDa

I think that something has been going on between some Herpes viruses, gram negative bacteria and possibly HERV (endogenous retroviruses, those which are part of our genome).

There's an urgent need to see the forest, which is made up by trees .

 

[paolo]

@paolo and @Valentijn IGeneX Western Blot labs results states under LIMITATION: (…) Some viral antibodies cross-react with 31, 41, 83-93 kDa

I think that something has been going on between some Herpes viruses, gram negative bacteria and possibly HERV (endogenous retroviruses, those which are part of our genome).

There's an urgent need to see the forest, which is made up by trees .

There is cross reaction, because many organisms on earth share common proteins or lipoproteins. For the same reason you can produce antibodies that cross react with your own tissues: because the bacteria or virus that is infecting you, shares with your body some antigens. This mechanism is called 'molecular mimicry', and is well known.

So, for some tests it is possible a false positivity.

 

[Hip]

Given that many ME/CFS patients have chronic reactivations of herpes family viruses, might this make them prone to false positive Lyme tests?

 

[Valentijn]

Given that many ME/CFS patients have chronic reactivations of herpes family viruses, might this make them prone to false positive Lyme tests?

No, the the cross-reacting one is IgM, and that's the one which should be negative with EBV reactivation. Unless our immune systems are doing something really whacky