Vaccine-triggered CFS linked to nasopharynx inflammation, and 81% cured or improved by treating this nasopharyngitis

[Richard7]

I am not sure that the vaccine is the issue.

In the video he says that the causal relationship between the vaccine and the CFS is unknown but suggests that the cause could be the adjuvant. Which to this nonscientist seems both fair, and irrelevant to those who already have CFS (unless they suspect that their CFS was caused by a vaccine and have access to a time machine).

If the research had tested people with CFS from many causes and shown that this treatment was only relevant in post vaccine CFS, well then I could see that it was an issue.

Thing is I would be interested even if the association with the vaccine was coincidental.

Jared younger, for example, has suggested that this sort of chronic infection could be a cause of CFS/ME.

Given the frequency with which I read descriptions of sinus/throat issues on these forums the epipharynx would seem a suitable place to look for a chronic infection and something easy to test so that we can rule it in or out.

I have sent the info to my doctor and am hoping that this is something she is willing to do, or that she can refer me to a suitable doctor.

(BTW I am one of those people who found that I improved with the dental probiotics.)

 

[Jonathan Edwards]

I think it is interesting that the study authors found an abundance of lymphocytes in the nasopharynx submucosal area, especially B-lymphocytes (B-cells), but also T-lymphocytes (T-cells), which they found were highly activated, and colocated with epithelial cells. Knowing very little about autoimmunity, I can't myself interpret the significance of this finding, but I imagine it may well have some import in autoimmune conditions.

No it is not interesting, Hip, it is called your tonsils, or at least the nasopharyngeal part of the Waldeyer or tonsillar ring. It is one of the first things you learn in immunology, or even school biology. The back of the nose is full of lymphocytes - in everyone.

As far as I can see all this study consists of is saying that if you stuff a cotton bud hard enough into someone's nose it will bleed and you can fool them into thinking they have 'nasopharyngitis' and charge lots of money. Most of them will find it so awful having something stuck in their nose they will stop coming back (as recorded) but a few will carry on. If you stop rubbing quite as hard you can get less bleeding and proclaim they are cured.

The immunology presented is rubbish. The 'trial' is not even properly set up and completely uncontrolled. PACE may be bad but this scores -99 I am afraid. Complete junk. More than that I would consider it a form of assault and potentially criminal.

 

[barbc56]

@Hip wrote:

What false premise is the study build on.

That vaccines cause autoimmune diseases. ASIA does not exist and statistics bear this out. An interesting hypothesis at one time that just didn't pan out.

Narcolepsy, as far as I know is not an autoimmune disorder.

There are some statisticians who claim that the incidence of Narcolepsy may not be that much greater than what you would expect in the general population with or without vaccinations. But as you say, the jury is still out about this issue and tbh, I have not followed this issue closely enough to know if the thinking on this has changed or not.

The study design is lacking in quality. No control group, self report, etc. as well as authors who are biased that a nonexistent condition exists.

I'm not saying reactions don't occur with vaccines, pardon the double negative, but they are few and far between. I feel for those who do experience a reaction and wouldn't wish it on anyone.

If this theory was backed by good scientific evidence, I would go with that.

 

[Hip]

it is called your tonsils, or at least the nasopharyngeal part of the Waldeyer or tonsillar ring. It is one of the first things you learn in immunology, or even school biology. The back of the nose is full of lymphocytes - in everyone.

Thanks for clarifying that. But then the question arises, if you have chronic inflammation / infection in such an area crowded with lymphocytes, what effects (including presently unknown effects) might that have on the immune system?

We know that Streptococcus throat infections in children are linked to the triggering of OCD and tic disorders (PANDAS), in a manner which is thought be autoimmune-mediated. As far as I understand, Streptococcus infections in other parts of the body do not trigger OCD. So this suggests that, from the autoimmune perspective, there may be something special about the lymphocyte-rich oral / nasal areas.

When they test for Streptococcus infection in children, they sometimes use nasopharyngeal swabbing and then culture for bacteria. What if a chronic Streptococcus infection of the nasopharynx (or nearby lymphocyte-rich areas) is driving the autoimmune response that is believed to cause Streptococcus-linked OCD / tic disorders?

It would certainly be interesting to see if PANDAS patients also have this severe chronic nasopharyngitis.

As far as I can see all this study consists of is saying that if you stuff a cotton bud hard enough into someone's nose it will bleed and you can fool them into thinking they have 'nasopharyngitis' and charge lots of money. Most of them will find it so awful having something stuck in their nose they will stop coming back (as recorded) but a few will carry on. If you stop rubbing quite as hard you can get less bleeding and proclaim they are cured.

Certainly you have to rely on the honesty of the researchers, and that they have no intent of fooling people by rubbing harder or softer to get different amounts of blood on the swab.

Likewise, when you view the video (at 10:31) of the young girl who was wheelchair bound and couldn't lift her legs, and when you see that she becomes fully healthy after 46 days of treatment for her nasopharyngitis, you have to rely on the honesty of the researchers in presenting this as a representative case of the 4 cured patients.

In any case, you don't have to go through the nose to reach the nasopharynx; the lower part of the nasopharynx can be reached using a cotton swab via the back of your throat. This something you can try yourself, and if the cotton comes back with blood in it, then you have nasopharyngitis.

The 'trial' is not even properly set up and completely uncontrolled. PACE may be bad but this scores -99 I am afraid. Complete junk. More than that I would consider it a form of assault and potentially criminal.

It's a preliminary study that has had positive results.

If the results do not pan out in better controlled studies, then fine. But surely at this point in time, the first thing to do would be to commission another independent study. If these findings do pan out, then it might not only help patients with these conditions, but also potentially expand the understanding of autoimmunity.

I would consider it a form of assault and potentially criminal.

If you consider gently rubbing a soft cotton swab soaked in an anti-inflammatory zinc chloride solution on the mucous membranes just above the back of the throat a form of assault, then I am speechless!

I can't think of any other ME/CFS treatment which would be safer and gentler that this, simply rubbing on an anti-inflammatory solution to the nasopharynx just above the back of the throat.

That vaccines cause autoimmune diseases.

In the Hotta study, they do not say that vaccines cause autoimmune diseases; there isn't the evidence for this in the general case; rather they work on the hypothesis that they might, which is perfectly valid.

And even if the HPV vaccine does not cause this CFS-like syndrome, that does not affect the results of the study.

As Richard7 says above, if you sidestep the issue of whether the HPV vaccine caused this CFS-like condition, these researchers still appeared to find severe chronic nasopharyngitis in all of the CFS patients, but only in 5% of the healthy controls, and they found that treating the nasopharyngitis cured 25% of the patients, and improved 81% (and moreover they found that CFS improvements only appeared in patients whose nasopharyngitis improved with the ZnCl2 treatment, so there was a direct correlation); so those findings just on their own should be of significance, if further studies can replicate them.

Narcolepsy, as far as I know is not an autoimmune disorder.

There is increasing evidence that narcolepsy is an autoimmune condition.

 

[Hip]

I emailed Dr Osamu Hotta to clear up a few details and he allowed me to post his answers. (His answers are complete enough to make the exact wording of my questions superfluous.)

Thanks for doing that, Richard7. And thanks to Dr Hotta for his response.

This is interesting:

3. One out of four patients who had achieved remission relapsed a few months after discharge, but a remission was obtained again due to additional epipharyngeal treatment.

It indicates that if this treatment does work for you, you may need to continue with regular treatments of the nasopharynx in order to keep your CFS-like symptoms at bay.

 

[barbc56]

@Hip

You're right, new evidence does seem to point towards narcolepsy as having a strong immune component and may or may not be an autoimmune disorder. There's also the possibility that an autoimmune disorder triggered the narcolepsy but the actual narcolepsy is still a neurological disorder but I think it may be a matter of defining or the two overlap.

The following says the h1n1 flu as well as the vaccine can also trigger narcolepsy. I wonder if there's a genetic component and if there's a difference in percentage between vaccination triggered vs.flu triggered narcolepsy? Edit. I can't find this latter information so if someone could find some citations, it would be helpful.

Fascinating! Thanks!

http://sciencenordic.com/study-explains-why-h1n1-flu-can-cause-narcolepsy

Edit. It looks like certain cells in the blood have something, sorry can't look it up without losing text and there may eventually be a blood test.

 

[JES]

I followed the "Pandemrix-gate" situation closely as it happened in my country primarily. If I remember correctly it was a combination of having certain genetics and also the special make-up of the Pandemrix vaccine. Pandemrix contained a certain viral protein that reminded of a brain protein that controlled sleep rhythm, whereas other H1N1 vaccines didn't have this ingredient and thus didn't cause narcolepsy. So if you were extremely unlucky in the lottery (adolescent+pandemrix+genetic makeup), then vaccination could cause the immune system to attack both the vaccine protein and your own protein.

 

[barbc56]

What I found interesting is that the actual flu can also trigger narcolepsy. Looks like it's a situation where you're dammed if you do and damned if you don't situation.

 

[Jon_Tradicionali]

@Jonathan Edwards

You're correct in that no biological parameters were tested in this study. The whole thing is quite basic in concept. However, the results speak for themselves as patients who are bedbound and recovering from this treatment suggests this is more than just a placebo effect.

I'm also aware that Lipkin is investigating the nasopharyngeal microbiome so his results may just tie in with Hotta's study and in a way validate it.

"In conclusion, the link between CFS and epipharyngitis after HPV vaccine could be the alteration in the immune neuroendocrine system. It is possible that an abrasive ZnCl2procedure on the epipharynx mucosa induced improvement in CFS by restoration of the immune neuroendocrine system. This hypothesis should be confirmed with a controlled clinical trial and determinations of cytokines and hormones before and after treatment of patients with chronic fatigue syndrome."

http://link.springer.com/article/10.1007/s12026-016-8854-2

Bold=What needs to be done to test the hypotheses.
Underlined=Hypotheses on how this treatment worked.

N.B - Narcolepsy is well documented to be caused by antibodies to hypocretin neurones in the brain. Therefore it is an autoimmune condition.

 

[Sidereal]

I have to say, nothing makes me quite as sick as zinc lozenges. After about 4 days of that stuff I felt really ill with immune activation and GI disturbance like extreme bloating.

 

[eljefe19]

Is Zinc Chloride available as a supplement?

 

[Seven7]

1) I am assuming the HPV vaccines were nasal. If not the injections make no sense to cause an issue.
2) what was the virus/ bacteria causing the infections? Would be nice to know. So could be something that came in the vaccine or already in body? Adjuvant?

 

[barbc56]

2016 Japanese study (full paper here), Dr Osamu Hotta et al looked at 41 patients who developed chronic fatigue syndrome (CFS) after receiving the human papillomavirus (HPV) vaccine.

I'm a bit confused about the above citations. Unless I missed it, the authors are saying patients developed functional somatic symptoms and not me/cfs. Furthermore, where are the patients who were bedbound and then cured?

I'm not sure how we ended up discussing narcolepsy after the H1N1vaccination but will reread the entire thread as it looks like I might have missed something.

This is what the authors wrote in the study cited in the OP.
Abstract

The epipharynx is an immunologically active site even under normal conditions, and enhanced immunologic activation is prone to occur in response to an upper respiratory infection, air pollution, and possibly to vaccine adjuvants. Due to the potential link between the central nervous system and immune function, a relationship between epipharyngitis and autonomic nervous disturbance as well as autoimmune disease has been suggested. Various functional somatic symptoms have been described after human papillomavirus (HPV) vaccination, although a causal relationship has not been established. We examined the epipharynx in young women showing functional somatic symptoms following HPV vaccination. Surprisingly, despite having minimal symptoms involving the pharynx, all patients were found to have severe epipharyngitis. In addition, significant improvement in symptoms was seen in most patients who underwent epipharyngeal treatment. Thus, we speculate that the chronic epipharyngitis potentially caused by the vaccine adjuvant may be involved in the pathogenesis of functional somatic syndrome (FSS) post-HPV vaccination. Further, we suggest that epipharyngeal treatment may be effective for various types of FSS regardless of the initial cause, as well as for some autoimmune diseases, and that this may be an important direction in future research.

My bold.

 

[Hip]

Unless I missed it, the authors are saying patients developed functional somatic symptoms and not me/cfs. Furthermore, where are the patients who were bedbound and then cured?

Yes, that's right, in the Hotta 2016 paper, the authors call it a functional somatic syndrome, which of course is a general category that includes ME/CFS, fibromyalgia, multiple chemical sensitivity, and Gulf War illness.

But if you look at the list of symptoms (see this post) of this post-HPV vaccination functional somatic syndrome, they would satisfy the CDC definition of CFS.

In the paper they note that:

Human papillomavirus (HPV) vaccination is performed worldwide for prevention of cervical cancer. However, in a small number of cases, severe chronic fatigue syndrome/fibromyalgia-like symptoms have been reported following HPV vaccination and, despite the lack of a proven causal relationship, this potential adverse effect is of growing concern in Japan and elsewhere

And the title of the Dr Osamu Hotta video is:
Chronic fatigue syndrome Following Human Papillomavirus Vaccination: Is Latent Epipharyngitis to Blame?

(By "latent" I think they mean "hidden" rather than "inactive").


It is hard to say whether this post-HPV vaccination syndrome is CFS, or just some CFS-like functional somatic syndrome. Even if it is not CFS, Hotta's research, if it pans out, would be of benefit to patients with the same post-HPV vaccination functional somatic syndrome, or to similar such functional somatic syndromes unconnected to vaccination.

And what you quoted above in bold, where the Hotta study authors speculate that chronic epipharyngitis (nasopharyngitis) may be involved in other functional somatic syndromes or autoimmune diseases, is of interest. It seems feasible that if severe chronic nasopharyngitis is the cause of the post-HPV vaccination syndrome, it may potentially be causing other functional somatic syndromes, so that would be worth checking.

The authors note that: "surprisingly, despite having minimal symptoms involving the pharynx, all patients were found to have severe epipharyngitis". So nasopharyngitis may be a hidden condition in many patients, because the pharynx looks fine, and you cannot normally see the nasopharynx, and even when there is severe nasopharyngitis, the patient does not feel any local symptoms in the nasopharynx area.

In fact, they found that in the 39 female healthy controls, 56% had mild to moderate nasopharyngitis, and 5% had severe nasopharyngitis (I don't think they mention these healthy controls in the paper, but they are detailed at timecode 7:36 of the video), yet were not aware of it.

So mild to moderate nasopharyngitis appears common in the general population, at least in Japan.

 

[Richard7]

@barbc56 I agree. It is not the academic paper but the conference presentation that speaks of CFS. It is also in the video that one sees that patient who is described as being a) representative and b) bedbound for 6 months.

And if you look at the symptoms described at 6 minutes in it seems clear that some of the subjects would not meet the Canadian consensus criteria.

Only 39 of the 41 are said to have generalised fatigue. There is nothing about PEM.
Only 36 of the 41 are said to suffer from disturbed sleep (Of course we do not know how they defined it and there are occasions when I am able to sleep through - so not disturbed - but still have unrefreshing sleep. )

They perhaps all meet the pain requirement 40 of the 41 reported headaches, 25 joint pain and 24 gereralised pain but there is not enough information to know if this really meets the definition. It does not say headache of a new pattern or type, or joint pain without redness or swelling etc.

under neurological symptoms we have 28 with cognitive impairment/ memory loss; 31 with dizzyness; 33 with photophobia; 28 with tinnitus; 10 with loss of consciousness. I am not sure if the 11 with involuntary movement and the 14 with restless leg would have these symptoms filed under the neurological cattegory or not.

But really without proper diagnosis using a clearly defined set of criteria we will never know.

But as I have said above: 1 we know that there is an argument that ongoing chronic inflammation or infection can lock people into CFS/ME; 2 In this research it looks like some people with something like CFS had chronic epipharyngal infection; 3 it would seem from this research that it is much easier to test for than enteroviruses, for example, and much easier to treat if present; So it would seem to be worth looking into

Or do you think that whole chronic infection/inflammation angle is rubbish?

 

[Richard7]

@barbc56 I should add that as a person who has an interest in science being done well I really wish all of this research was done with carefully diagnosed subjects, replication, blinding etc etc.

 

[Hip]

There does seem to be differing views as to whether the HPV vaccination can cause a CFS-like syndrome. This Italian research published in 2016 suggests it can:

Severe somatoform and dysautonomic syndromes after HPV vaccination: case series and review of literature

We retrospectively described a case series including 18 girls (aged 12–24 years) referred to our “Second Opinion Medical Network” for the evaluation of “neuropathy with autonomic dysfunction” after HPV vaccination. All girls complained of long-lasting and invalidating somatoform symptoms (including asthenia, headache, cognitive dysfunctions, myalgia, sinus tachycardia and skin rashes) that have developed 1–5 days (n = 11), 5–15 days (n = 5) and 15–20 days (n = 2) after the vaccination.

And Denmark in 2015, they published a study finding that orthostatic intolerance and postural orthostatic tachycardia syndrome (POTS) are suspected adverse effects of the HPV vaccine. In the study, the patients with post HPV vaccination POTS had the symptoms:

All patients had orthostatic intolerance, 94% nausea, 82% chronic headache, 82% fatigue, 77% cognitive dysfunction, 72% segmental dystonia, 68% neuropathic pain.

But in response to that Italian research, in this article it says:

First of all, the HPV vaccine was studied for safety in 30,000 people for 7 years before licensure.[2] It has been formally studied both in phase 4 postlicensure studies and by the Vaccine Safety Datalink in more than a million people, and has been found not to cause chronic fatigue or fibromyalgia. When those symptoms do occur, they occur at the same rate in both vaccinated and unvaccinated groups.

This article is interesting:
European Agency Declares HPV Vaccines Safe, But Denmark, Japan Skeptical

many of the HPV vaccine adverse event reports come from the vaccine manufacturers themselves or those with substantial conflicts of interest, citing the potential for heavy bias.

The Nordic Cochrane Centre criticized the European Medicines Agency (EMA) report on the safety of HPV vaccines:

So Why Did Cochrane Complain?

Cochrane had many serious concerns, not only about the EMA’s report, but about details from an internal draft report, which was leaked, revealing shocking omitted information.

Some of the concerns addressed are:

• The EMA has not been open and accountable about uncertainties regarding the safety of HPV vaccines, nor has it respected the rights of citizens to be informed of the concerns about the vaccines.
• The EMA asked the vaccine manufacturers to search in their own databases for side effects of the vaccine, and did not check the company’s work for accuracy.
• The EMA has not upheld professional and scientific standards when evaluating the safety of HPV vaccines.
• There has been unfair treatment of Danish whistleblower, Doctor Louise Brinth, who raised concerns about possible serious harms from the HPV vaccines (read her report, here).
• The Danish Health and Medicines Authorities have not been fairly treated when raising concerns about possible serious harms from HPV vaccines.
• The EMA has imposed extreme secrecy and life-long confidentiality agreements on its working group members and scientific experts, which might not be in the public’s interest.
• Several EMA staff, including its director, appear to have undeclared conflicts of interest.
• There is a lack of transparency in declaring names and conflicts of interest of experts consulted.

Source: HPV Vaccine Safety Handling 'Outright Scientific Misconduct', Says Cochrane

More details: Nordic Cochrane Centre: Complaint to the European Medicines Agency (EMA) over maladministration at the EMA.

 

[Msmaud]

>Lipkin is investigating the nasopharyngeal microbiome
Is there a place where this information is available? Anecdotally, a lot of adenoid/nasopharynx/abcess weirdness preceding ME/CFS from mono.

 

[Richard7]

Ok, I have just seen an ENT.

He was not super impressed by the paper: wants a larger study etc.

But does not consider it implausible. He is aware of a small number of patients who got out of CFS by identifying allergens and eliminating them from their diet/environment, and many patients who did not have any success with that pathway.

So he gets the immune possibility.

Anyway, he looked in my nose and saw that the the nasopharynx was moderately inflamed, and based on my symptoms diagnosed it as a chronic infection.

He thought that swabbing it with zinc chloride solution was a good idea, but noted that one of my nostrils is a bit tight and will bleed even if the nasopharynx is OK.

He also suggested noting how deep the swab (a sterile 15cm cotton tipped applicator) reached in the wider nostril and comparing it to the other swab, so that I could ensure that I was getting all the way to nasopharynx in the tighter nostril.

He was also in favour of rinsing sinuses with saline solution 1tsp/500mls boiled then cooled water once a day.

It was heartening to find that he considers CFS to be obviously phgysiological and psychological approaches a waste of time. And a bit of a shame to discover that much of the treatment I had recieved from doctors for sinusitus in the past was a waste of time (antibiotics, antifungals and gargelling stuff) apparently any solution worth trying is to be found in the nose (and presumably in the hands of an ENT).

 

[Jon_Tradicionali]

Has anyone attempted this yet?

Either swabbing pharynx or the Q tip test?

I personally tried brushing the Q tip against pharynx but found no trace of blood. It could be that I didn't brush hard enough or deep enough into the cavity.