ME caused by squeezed nerve?

[Sushi]

You should perhaps read my article on the Atlas which was published many years ago and is a bit out of date.

Thanks, I did read the article--interesting. But for me it still doesn't explain some of the cardinal symptoms of ME. Since I fit the diagnostic criteria in the ICC (and you mentioned Chronic Fatigue Syndrome in the article), perhaps we not be talking about the same illness.

Sushi

 

[Hip]

You raise some important points. You must have seen a graphical representation of patient improvement. We have patients with over 40 symptoms which soon start resolving. I have a great deal of such evidence. If such evidence does not convince anyone than I cannot help them. Almost all the symptoms can be explained nerologically and anatomically.

I would certainly like to see details of this evidence, particularly the approximate percentage of ME/CFS patients that your treatments have helped.

If you look at the various ME/CFS treatments available (supplements, drugs, and physical therapies), you typically find that no treatment works universally for ME/CFS patients, but may have some benefit for around 10% to 30% say. Many patients on this forum have tried dozens of treatments, so have good experience of trying various things. The general rule seems to be that what works for one patient may not necessarily work for the next. But speaking for myself, if I see a treatment that even has just 2% chance of success, I will probably try it, because you never know when you are going to be in that lucky 2%.

I do not need to classify those who seek my help into which bit of the criteria they fit in the Oxford criteria, or the CCD or any other classification. These are exercises more for medics and psychiatrists. I have little patience for that having spent years studying, half believing and finally rejecting these notions totally.

I appreciate that if your techniques are resolving patients' symptoms, it perhaps does not matter so much what specific condition they may have, and that it's more important that they are getting benefits.

But since ME/CFS is diagnosed on its symptoms alone (at present there are no blood tests that can diagnose it), you would have to use some kind of criteria to diagnose ME/CFS.

Perhaps the three most well known diagnostic criteria are the Canadian Consensus Criteria (CCC), the CDC (Fukuda 1994) Criteria, and the Oxford Criteria (OC).

The CCC are the strictest criteria, the CDC a little less strict, and the OC are vague and sloppy. The OC are used a lot by psychiatrists, probably because psychiatric theories of ME/CFS are themselves vague and sloppy (not to mention downright ludicrous).

The CCC views ME/CFS in a much more neurological light.

 

[Hip]

Just for the benefit of people reading this thread and looking for an indication that they may have some jaw problems, Dr Amir said in this earlier post that the following muscles are painful when there are jaw problems:

The lateral pterygoid muscle is very painful on palpation. This muscle can be found by passing your finger into the cheek beside your upper teeth sliding it up and back. This muscle is nearly ALWAYS extremely painful confirming the presence of a jaw problem.

(I can confirm that as I pushed my finger to the top and back of the crevice between my cheeks and my upper gums, that area was somewhat painful in my case).

The Lateral Pterygoid Muscle

​

Many other muscles around the mouth like the masseters, the mylohyoids, the temporalis, the sternomastoid, the trapezius are extremely painful at the point of insertion in the skull - usually one side is more painful than the other.

(In my case, I found all these muscles a little painful on pressing, except the temporalis).

The Masseter Muscle . . . . . . . . . . . . . . . . . . . . . . . . . The Mylohyoid Muscle

. . . . .

The Temporalis Muscle . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .The Sternomastoid Muscle

. . . . .

​

The Trapezius Muscle

 

[Dr Amir]

Thanks, I did read the article--interesting. But for me it still doesn't explain some of the cardinal symptoms of ME. Since I fit the diagnostic criteria in the ICC (and you mentioned Chronic Fatigue Syndrome in the article), perhaps we not be talking about the same illness.

Sushi

Sushi
I cannot diagnose any patient into a non existent condition!
I have never found a patient who actually had an illness you describe although they presented with these labels having been diagnosed by ME/CFS specialists who shockingly have never made one iota of difference to their health !

 

[Undisclosed]

Sushi
I cannot diagnose any patient into a non existent condition!
I have never found a patient who actually had an illness you describe although they presented with these labels having been diagnosed by ME/CFS specialists who shockingly have never made one iota of difference to their health !

That's quite rude -- coming onto a forum for patients with ME and then saying their illness doesn't exist.

Is a dental surgeon even qualified to diagnose ME?

 

[Kati]

That's quite rude -- coming onto a forum for patients with ME and then saying their illness doesn't exist.

Is a dental surgeon even qualified to diagnose ME?

It sounded quite arrogant indeed but I decided it was not worth readingthe whole thread and not worth getting upset over. Too many so called health care professionals have an opinion of what they think we might have but do not research nor do they validate their opinions. These kinds do not deserve to hold a professional licence to care for other human beings.

 

[Dr Amir]

I would certainly like to see details of this evidence, particularly the approximate percentage of ME/CFS patients that your treatments have helped.

We may be able to present the evidence graphically in a few weeks. You must appreciate that I am a one man band
and I do not have the resources of big pharma or an Ivy league university.



I appreciate that if your techniques are resolving patients' symptoms, it perhaps does not matter so much what specific condition they may have, and that it's more important that they are getting benefits.

But since ME/CFS is diagnosed on its symptoms alone (at present there are no blood tests that can diagnose it), you would have to use some kind of criteria to diagnose ME/CFS.

Perhaps the three most well known diagnostic criteria are the Canadian Consensus Criteria (CCC), the CDC (Fukuda 1994) Criteria, and the Oxford Criteria (OC).

The CCC are the strictest criteria, the CDC a little less strict, and the OC are vague and sloppy. The OC are used a lot by psychiatrists, probably because psychiatric theories of ME/CFS are themselves vague and sloppy (not to mention downright ludicrous).

The CCC views ME/CFS in a much more neurological light.

That's quite rude -- coming onto a forum for patients with ME and then saying their illness doesn't exist.

Is a dental surgeon even qualified to diagnose ME?

That's quite rude -- coming onto a forum for patients with ME and then saying their illness doesn't exist.

Is a dental surgeon even qualified to diagnose ME?

I am sorry u got the wrong end of the stick. I have never come across a case of any of these illnesses although many patients walk in with that label.
I wait with baited breath each time any new patient walks in to see if they do actually have the label they were diagnosed into. I have 2 flying in from Sweden today. When patients come here I diagnose them from my own perspective and they invariably fit into TMJ dysfunction for which I treat them and they generally recover.

I apologise if my comments caused you or anyone else any upset. I have no intention of persuading anyone that they do not have any of these disease labels.

I do not have the time to get into any controversy and am here purely to give a different perspective. If you do not want it I shall stop posting.

Patients who suffer years from some symptoms, repeatedly go to their physicians who cannot figure out what is wrong with them and eventually through a process of elimination classify them into one of these labels. This brings a great deal of relief to the patients. The article quoted earlier shows Hannah who got diagnosed into ME/CFS by such a process. Patients are often elated that after years of frustration some amazing clinician has finally diagnosed them into some illness label. I have no desire to blow that bubble of 'excitement' or grief.

There are upteenth specialists who solely are in the business of classifying patients into some disease entity. Patients actually pay thousands for just such a service.

Regarding my qualification to treat such patients I am amply qualified and very experienced in my business. I am not in the business of diagnosing people into any illness labels. That is for the medico-psychiatric community.

 

[ukxmrv]

I wonder if Dr Amir is describing the situation of poor CFS diagnosis in the UK (which may be the same in other areas of Europe).

At my local ME group I am meeting patients who are diagnosed with CFS/ME who have never had a good physical examination and a paucity of tests. It has to an extent become a dumping ground for anyone who is tired (TTT) or fatigued due to the use of the Oxford criteria and the NICE Guideline. I heard of a patient visiting a "CFS" clinic in England who was seen by a nurse and never given an examination by a doctor. Their GP was expected to carry out any blood tests.

It is possible that Dr Amir may not have met a ME patient who was diagnosed by one of the experts . I am guessing would also have been trained that ME is not a "real" disease. I think that Dr Shepherd (from the MEA) describes how he was taught about ME in the UK Medical school system. A double whammy for anyone visiting a doctor in the UK.

 

[Undisclosed]

I wonder if Dr Amir is describing the situation of poor CFS diagnosis in the UK (which may be the same in other areas of Europe).

At my local ME group I am meeting patients who are diagnosed with CFS/ME who have never had a good physical examination and a paucity of tests. It has to an extent become a dumping ground for anyone who is tired (TTT) or fatigued due to the use of the Oxford criteria and the NICE Guideline. I heard of a patient visiting a "CFS" clinic in England who was seen by a nurse and never given an examination by a doctor. Their GP was expected to carry out any blood tests.

It is possible that Dr Amir may not have met a ME patient who was diagnosed by one of the experts . I am guessing would also have been trained that ME is not a "real" disease. I think that Dr Shepherd (from the MEA) describes how he was taught about ME in the UK Medical school system. A double whammy for anyone visiting a doctor in the UK.

What Amir appears to believe is that there is no such thing as ME -- our symptoms are caused by TMJ disorder.

 

[Mij]

It seems Dr.Amir has also helped patients with other illnesses, including people diagnosed with MS, migraine etc.

http://www.standard.co.uk/lifestyle...-cure-ms-migraines-and-paralysis-6764060.html

@Dr Amir do you believe MS and migraine exists?

 

[Nielk]

"Amir's technique also cured Amber Baillie-Lane, a 31-year-old clinical scientist, of her ME symptoms - including 10 years of heartburn, migraines and back pain - within weeks."

Those symptoms have nothing to do with the neuro immune disease ME.

I'm afraid that Dr. Amir is making spectacular claims which should not be legal.

 

[Undisclosed]

"Amir's technique also cured Amber Baillie-Lane, a 31-year-old clinical scientist, of her ME symptoms - including 10 years of heartburn, migraines and back pain - within weeks."

Those symptoms have nothing to do with the neuro immune disease ME.

I'm afraid that Dr. Amir is making spectacular claims which should not be legal.

Arghhh. I don't know what's worse -- having a health professional trying to tell you are depressed and should be taking anti-depressants or having a health professional just outright denying that ME exists at all.

If correcting TMJ disorders cures us, then why on earth haven't any doctors who specialize in ME picked up on this and focused all their treatments on correcting our misplaced jaws and atlas thingies. Wouldn't it be nice for all of us if our ME could be cured so easily. NOT. False hope based on no research.

 

[Nielk]

I have serious problems with the Canadian Consensus Document which was prepared in 2004. I registered serious reservations in a four page letter to them at the time. Unfortunately it went on to be adopted by every Tom Dick and Harry around the world. It has absolutely no basis for the patients afflicted with these illnesses.

This is a ridiculous statement and offensive to us patients who are suffering from the serious neuro-immune disease ME.

You state "these illnesses"- which gives away your ignorance.

Just because you have Dr. In front if your name does not mean that you know anything about this specific disease.

In addition, your claim that you can heal EVERY person with ME that you have seen is ridiculous.

 

[Hip]

What Amir appears to believe is that there is no such thing as ME -- our symptoms are caused by TMJ disorder.

I think the situation is more nuanced. There are many possibilities here, which need to be considered. And even if Dr Amir is making claims which may go beyond what the evidence supports, or even claims that are simply incorrect, the fact that his treatment techniques have significantly improved some patients with symptoms that resemble ME/CFS or MS should merit careful investigation and consideration.

And it is important to note that Dr Amir's treatment techniques, and what Dr Amir himself says about these treatment techniques, are two entirely different things. Dr Amir's theories about how his techniques work, and his theories on ME/CFS, may be right or wrong, but in any case, this is completely independent to the efficacy of the techniques themselves. Many ME/CFS doctors for example offer treatments that are beneficial, but their own theories on how their treatments work may or may not be right; often these theories are just educated guesses.

Dr Amir may be well off the mark in his views on ME/CFS and his treatments; but his treatments would still appear to have some efficacy, at least for some patients.

So let's separate Dr Amir's theories about ME/CFS and his treatment techniques from the actual techniques themselves. In other words, let's look at any empirical evidence Dr Amir can provide us, rather than any theories he espouses.


Now let's consider some possibilities:

• Perhaps the first thing to consider is the incorrect labeling of ME/CFS or MS: were most of the patients that Dr Amir's treatments have helped misdiagnosed with ME/CFS or MS? After all, ME/CFS is a wastebasket diagnosis, which doctors may apply when they cannot find any other explanation for the patient's symptoms.

Even if this is the case, the fact that Dr Amir's treatments have led to dramatic improvements in some patients should be of interest just in itself. It is certainly of great interest to the patients he has helped.


• The next thing to consider is whether TMJ dysfunction may be a causal factor in some patients that genuinely have ME/CFS. TMJ dysfunction is a common comorbidity of ME/CFS, and as is the case with all disease comorbidities, it is logically possible that the comorbidity is playing a causal role in the disease. So if TMJ dysfunction is indeed playing a causal role in ME/CFS, then treatment for the TMJ dysfunction may well lead to improved ME/CFS symptoms.

This does not necessarily mean that TMJ dysfunction is the sole cause of ME/CFS (even if Dr Amir says it is — as I said, his own theories should be kept separate from his techniques); it just means that TMJ dysfunction might play a role in ME/CFS. Earlier I offered a possible explanation of why TMJ dysfunction might play a role in ME/CFS, based on the vagus nerve sickness behavior theory of ME/CFS posited by Michael VanElzakker.

• Or even if TMJ dysfunction is not playing a causal role in ME/CFS, nevertheless, TMJ treatment may somehow offer benefits for ME/CFS patients. An analogy can be made here to the controversial treatment of MS by using stents to widen the veins issuing from the head: by improving blood drainage from the brain in this, some have obtained improvements in MS. However, this does not mean that MS is simply caused by narrow cerebral veins.



I would like to see more empirical evidence and detail from Dr Amir regarding his techniques. I have asked twice already for some indication about what percentage of his patients who were diagnosed with ME/CFS get benefits from his treatments. This is important information.

Even if it were only 10% that benefited, that would still make Dr Amir's treatments well worth trying out, because as I mentioned earlier, most ME/CFS treatments only seem to work for a minority of patients, so with all treatments, it's a case of trying out your luck.

 

[Nielk]

Are there any published double blinded studies proving the claims by Dr. Amir?

Think of the logic here. He claims there is no such a disease as ME or CFS. He stars that all patients that came to him have been misdiagnosed as CFS and or ME.

By unbelievable odds, all these people who have suffered from a myriad of umbrella "things" we're all successfully treated with his Atlas balance.

This reminds me of the Chiari malformation fad of a few years back. They also claimed that this was the problem for CFS patients. They had to undergo dangerous brain surgery.

A few were helped but, the others have filed lawsuits for unneeded surgeries.

If. As Amur claims, we all suffer from diverse ailments, how could we all be healed with the same treatment?

I would venture to say that he has found a possible treatment for TMJ. Some people who suffer from TMJ, are tired from not sleeping well. Most suffer from headaches from it. Some might have been misdiagnosed as CFS based in the Ixford Criteria. Those patients will probably be helped from this treatment.

No wonder Amir does not like the CCC. Patients who suffer from CCC will not be helped by TMJ treatments. This is a problem for him because he will not be able then to perpetuate the claim that he can treat ME.

He says he can cure ME. Yet, he doesn't believe in ME.

I don't believe him.

 

[Dr Amir]

I think many of you are very touchy at finding out that there may be a cure out there. So I shall leave you guys to continue on your quest. If the 2 articles I posted do not make any impression on any of you I do not know what will. I have a far far superior rate of success than the 10% you feel will be good enough for you.

I shall not make any further postings here as I need my sanity for the hundreds of patients who seek my help from all over Europe. Many thanks to those who have somewhat appreciated my responses.
.

 

[Sushi]

I cannot diagnose any patient into a non existent condition!
I have never found a patient who actually had an illness you describe although they presented with these labels having been diagnosed by ME/CFS specialists who shockingly have never made one iota of difference to their health !

Or, we went to an ME specialist who used laboratory tests which showed infections with pathogens, a dysfunctional immune system, a dysfunctional autonomic nervous system.....on and on....we were given treatment that brought us great improvements.

I have no intention of persuading anyone that they do not have any of these disease labels.

No, I don't have a label, I have an illness. For me (who fits the ICC very well) that diagnosis has been very helpful in understanding my illness and the treatments that were likely to (and did) improve my severe symptoms.

Patients who suffer years from some symptoms, repeatedly go to their physicians who cannot figure out what is wrong with them and eventually through a process of elimination classify them into one of these labels.

Or, their physician uses testing and medical history to point to disease conditions which can be successfully treated.

I am not in the business of diagnosing people into any illness labels. That is for the medico-psychiatric community.

I don't think anyone here wants to be "diagnosed into an illness label!" However, an accurate diagnosis by a qualified medical practitioner can be very helpful in determining treatment and designing further research.

We are not talking about a

medico-psychiatric community

, we are talking about very qualified MDs who completely reject psychiatric causation of ME.

Sushi

 

[Nielk]

I think many of you are very touchy at finding out that there may be a cure out there. So I shall leave you guys to continue on your quest. If the 2 articles I posted do not make any impression on any of you I do not know what will. I have a far far superior rate of success than the 10% you feel will be good enough for you.

I shall not make any further postings here as I need my sanity for the hundreds of patients who seek my help from all over Europe. Many thanks to those who have somewhat appreciated my responses.
.

You call questioning your assumptions "insanity".

How do you explain post exertional exhaustion, low nk cell function, high viral load, POTS, sore throat etc. ?

How does someone's jawbone shift overnight? Most of us have had sudden initiation of disease?

It will take a lot more than hearsay by some people who have been helped to convince me.

 

[Hip]

I think we have been a bit inhospitable towards Dr Amir.

Even if he holds the belief that ME/CFS is caused by TMJ dysfunction, and even if he has expressed this belief in an odd and dramatized way, by saying that ME/CFS does not exist, his theory can still be discussed. You don't have to agree with his views and beliefs to have a fruitful discussion.

Personally, I am not going to suddenly abandon the viral theories of ME/CFS on the basis of what Dr Amir is saying; however, we can consider for example whether TMJ dysfunction or trigeminal nerve dysfunction might somehow thwart an effective immune response, thereby preventing viral clearance, and in this way maintain the ME/CFS state.

So in other words we don't have to accept someones ideas and views in their entirety to make use of them.

How do you explain ... low nk cell function

I had a quick Google, looking at NK cell function in relation to the trigeminal nerve, and I found a possible connection, which is as follows:

This study found that the mesencephalic trigeminal nucleus (the area in the brainstem where the afferent trigeminal nerve running into the brain from the jaw and facial muscles terminates) includes a major circadian rhythm controller.

In particular, the study found that the mesencephalic trigeminal nucleus controlled the expression of the mPer1 gene (mammalian period 1 gene), a major circadian rhythm gene.

Now here's where it gets interesting: this study found that mice carrying a mutation in the mPer1 gene "display significantly altered rhythms of cytokine (eg, interferon-γ) and cytolytic factors (eg, perforin and granzyme B) in splenic natural killer (NK) cells".


So right here is a possible connection between the trigeminal nerve, jaw and facial muscles, and the functioning of natural killer cells.

 

[Wally]

@Hip,
Thank you for your thoughtful analysis and all the great diagrams showing the muscles in the head and upper body.

Unfortunately, it appears that Dr. Amir was unable or unwilling to be as thoughtful and humble in his interaction with people in this thread. In viewing an online MS Forum, Dr. Amir's delivery of his opinions and hypotheses was similar to how he presented himself here.

It is also unfortunate that Dr. Amir did not discuss his treatment of TMJ in more detail rather than steering the conversation to his apparent belief that a diagnosis of MS, ME and/or CFS is an inaccurate label for patients illnesses.

I have a feeling that the ME/CFS community may experience more strong opinions being thrown our way over the next couple of weeks following release of the P2P and IOM Reports. No matter what conclusions/recommendations these reports may contain, ME and CFS will most likely remain a hot button topic for some in the scientific/medical community (such as seen expressed in some of the comments by physicians/researchers to Miriam Tucker's article on Medscape and the new Pace Trial articles). I am personally stockpiling fire extinguishers and extra hoses should the rising temperature ignite a few fires that the volunteer ME/CFS Fire Department will need to be called into action to try to knock down.