ME caused by squeezed nerve?

[Hip]

@Wally
Yes, I have read quite a few of Dr Amir's threads elsewhere in the past as well, and I agree Dr Amir does have a strong views regarding the causes of diseases he treats, and a certain hyperbolic way of expressing his views.

However, such strong belief in your own theory is not unusual in practitioners that offer treatments for ME/CFS and other diseases. For example, the osteopath Dr Raymond Perrin believes that ME/CFS is caused by a build-up of toxins within the brain and the spinal cord, due to stagnation of lymph fluid drainage from the brain; he treats ME/CFS with certain lymph-moving massage techniques based on his theory, and sometimes this gets good results. There are quite a few threads on the Perrin Technique on this forum, with some people finding benefits from Perrin's treatment, and others not. But I have not seen any comments expressing incredulity towards Perrin, his technique, or his theory.

Dr Amir's theory on the TMJ dysfunction cause of ME/CFS would, on the face of it, seem no less likely than Dr Perrin's theory. So I think his treatment methods should be given a positive reception, just as Dr Perrin's have on this forum.

I think, though, if Dr Amir used a little less hyperbole in explicating his theories, then his explanations would go down better.

Instead of implying things on the line of: "ME/CFS does not exist, it's symptoms are just a manifestation of TMJ dysfunction," he might be better off saying something a little bit more toned down, like: "I believe that TMJ dysfunction underpins ME/CFS, and I have found that treating TMJ disorder brings significant remission of symptoms in those diagnosed with ME/CFS".

 

[Nielk]

There is a difference between members stating "the following ------- treatment has helped me" and a Practitioner promoting his treatment as an absolute solution. As a matter of fact, I think that it is a breach of the forum rules. ( rule #6).

The reason why I got all riled up is because of his statement that ME is not real and that the CCC is wrong. Has he ever seen, treated, studied thousands of real ME patients?

He us a dentist who treated a few patients who were misdiagnosed with CFS when what they really had was TMJ. Therefore he personally comes to the conclusion that all ME/CFS patients really suffer from TMJ.

What if Wessely's comes here and starts promoting GET and CBT? Will you welcome him as well?

 

[Hip]

The reason why I got all riled up is because of his statement that ME is not real and that the CCC is wrong. Has he ever seen, treated, studied thousands of real ME patients?

He us a dentist who treated a few patients who were misdiagnosed with CFS when what they really had was TMJ. Therefore he personally comes to the conclusion that all ME/CFS patients really suffer from TMJ.

I don't think Dr Amir is saying our ME/CFS symptoms are not real; he is just views the symptoms of ME/CFS to be caused by TMJ dysfunction, so in his view, the disease we have should be called TMJ dysfunction. I don't agree with this, and I think he's is likely wrong here. But nevertheless I would like to explore the possibility that TMJ dysfunction may be playing a causal role in ME/CFS.

The fact that he has put patients like cancer researcher Uzma Qureshi, who was almost bedbound with fatigue, into remission just using orthodontic appliances is totally remarkable. Whether those patients he successfully treated were real ME/CFS patients, though, as defined by the CCC or CDC criteria, I would have liked to find out by some further questioning.




One other interesting connection between the trigeminal nerve and ME/CFS is the drug naphazoline, which was one of Dr Jay Goldstein's favorite treatments for fibromyalgia and ME/CFS.

Naphazoline comes in the form of drops which are placed in the eyes. Goldstein found that in around one-fifth of his ME/CFS or fibromyalgia patients, naphazoline would bring significant remission from symptoms (mainly pain and tender point sensitivity, fatigue and brain fog symptoms) in a matter of seconds after application of naphazoline eye drops to the eyes (ref: here).

Naphazoline is an alpha adrenergic receptor agonist, and will stimulate the trigeminal nerve when the drops are placed in the eye. So here is possible evidence that the trigeminal nerve is linked to the pathophysiology of ME/CFS and fibromyalgia.

Thus Goldstein's observations on naphazoline provides plausible support for the idea that Dr Amir's manipulations of the muscular structures of the jaw — muscular structures which are innervated by the trigeminal nerve — may well lead to benefits for ME/CFS and fibromyalgia.

 

[IreneF]

I wear a nightguard for my TMJ problems. It works pretty well for head and jaw problems. It hasn't done a thing for my CFS.

 

[Nielk]

The fact that he has put patients like cancer researcher Uzma Qureshi

From Uzma's comment:

Terrible pains travelled from my right ear down the right side of my jaw and under my tongue. This would alternate from pain to numbness and loss of feeling in this area. The symptoms in my head and neck got worse and my body became subject to profound fatigue which concentrated more on the right than on the left side of my body. I would experience unusual tingling sensations in my arms down to my finger tips and in my legs, all of which debilitated me to an extent that I could barely hold a glass up to drink or hold a pen to write. Going to work was extremely difficult and out of the question. I was looking for ways to survive the tragedy that had befallen me.

Although the heading of this states Chronic Fatigue Syndrome, nowhere in Uzma's comment does it say that this is what she suffered from or that she was diagnosed with CFS.

@Hip - I'm not going to argue with you any longer. You have a right to look into this if it interest you. Just keep in mind that these people were not diagnosed with the CCC. I am not sure that this described the Fukuda either. Maybe the oxford.

 

[kisekishiawase]

I have jaw cracking, pain but isnt it from connectivity tissue, collagen, possibly autoimmune, etc or maybe eds. Since my knee also got problem too.

However this theory is interesting too. Especially the finding on jaw, nerve, circadian rhythm, mutation.

 

[SOC]

I think many of you are very touchy at finding out that there may be a cure out there.

What utter BS and insulting to boot! That sounds like Wessely school logic -- that we all want to be ill. Does that make sense to any reasoning person? Who would want to live like this?

We want a cure for our illness -- the illness as defined by the CCC or ICC. No doubt Dr Amir has "cured" people with a variety of symptoms including pain and fatigue. They may have even been misdiagnosed with "CFS", especially if Dr Amir is in the UK where every Tom, Dick, and Harry with a little fatigue is given a "CFS" diagnosis.

I think Dr Amir needs to read the CCC and the ICC so that he understands the illness we are talking about.

 

[Hip]

We want a cure for our illness

It seems that what some want is to substitute learning about an unusual and interesting treatment technique from its actual originator, with a rant against the said originator.

Dr Amir's view appears to be that TMJ dysfunction is the primary disorder, and ME/CFS and fibromyalgia are a consequence of TMJ dysfunction. Therefore he is in disagreement with the CCC, because the CCC say that TMJ dysfunction is a comorbidity of ME/CFS, whereas Dr Amir believes TMJ dysfunction is the root cause.

OK, this is a radical idea, but if you cannot listen to ideas that are a little different to your own, then you are never going to learn anything new.

And there is nothing intrinsically disrespectful about Dr Amir's view; it's just a theory of ME/CFS among hundreds of others out there.

 

[Gingergrrl]

@Hip How would this theory fit for someone like me who does not have TMJ but got ME/CFS following a severe case of mono from EBV? How was I healthy for 41 years prior to mono and why do I still test positive for active EBV almost three years later?

And I did feel the doctors tone was disrespectful.

 

[Hip]

And I did feel the doctors tone was disrespectful.

I felt that he was quite polite. He even asked in advance if it would be OK to post his thoughts on this thread. I said that we would be very interested to hear his views.

I guess Dr Amir may inadvertently come over as untactful when he says ME/CFS is a non-existent condition, especially since many ignorant members of the general public think precisely that, and we as patients always have to fight against such viewpoints, in order to make people realize that ME/CFS is real. But what I believe Dr Amir is saying is just that he thinks the symptoms of ME/CFS are caused by TMJ dysfunction, and so he views ME/CFS to be an incorrect label given to those who he believes really just have a TMJ disorder.

How would this theory fit for someone like me who does not have TMJ but got ME/CFS following a severe case of mono from EBV? How was I healthy for 41 years prior to mono and why do I still test positive for active EBV almost three years later?

It may not fit at all in your case. It may only apply to a subset of ME/CFS patients. I always think that ME/CFS likely has several different causes, and even within one patient, is likely underpinned by several different causal factors acting in tandem.

Or Amir's theory may not apply to any ME/CFS patients at all, and only work for certain ill-defined fatigue syndromes that are caused by some anatomical asymmetries. We don't have enough information on this treatment, and the type of patients it has worked for, to say anything for sure.

 

[Mari66]

Hi all

As the mother of Hannah described in Dr Amir's link I feel I have to comment on this blog. I have nothing to gain in doing so except to share our experience. I am a clinican by background and my beautiful daughter became very suddenly unwell and was diagnosed after many hellish month using the recognised guidelines with ME. By pure luck we met Dr Amir and a more caring and competent man you would not meet. He was the first clinican, and we saw many notable leads in this area to fully examine my daughter from top to toe and showed us immediately the problems with her anatomy leading to her significant problems.

He showed me the asymmetry in her body and explained the anatomy and physiology behind this, which made total sense. Despite all the millions spent on research there is no knowledge cause or treatement and that surely can't be right with all the technology now available

My daughter now has gone five months feeling great until this weekend when the latest appliance has caused some symptoms to return but Dr Amir is dealing with this.

I would implore any of you dealing with this on a daily basis to consider contacting Dr Amir, don't know here we would be without him. I say this only because I am so grateful for his care and want others to have that opportunity also

 

[Wayne]

He showed me the asymmetry in her body and explained the anatomy and physiology behind this, which made total sense.

Hi Mari,

I very much appreciate hearing from you. I've long believed structural issues are a critical component of ME/CFS, and have explored many different modalities to try to correct my own. I recently began to explore a therapy called Koren Specific Technique (KST). I started a thread on my experiences, and mentioned Dr. Amir in this particular post:

TMJ and Facial Pain Reduction

Thanks again for posting here on PR. I'm soooo pleased to hear about your daughter's improvements since seeing Dr. Amir.

Best, Wayne

 

[SOC]

Hi all

As the mother of Hannah described in Dr Amir's link I feel I have to comment on this blog. I have nothing to gain in doing so except to share our experience. I am a clinican by background and my beautiful daughter became very suddenly unwell and was diagnosed after many hellish month using the recognised guidelines with ME. By pure luck we met Dr Amir and a more caring and competent man you would not meet. He was the first clinican, and we saw many notable leads in this area to fully examine my daughter from top to toe and showed us immediately the problems with her anatomy leading to her significant problems.

Mari66,
My congratulations for finding a way to improve your daughter's condition! All of us here have lived many hellish months, most of us hellish years, so we know how miserable that can be and can only be happy for someone who has found her way out.

Our question is not whether the treatment your daughter received from Dr Amir helped her. Clearly it did. The question is whether is applies to any of us, or even everyone with ME.

You say your daughter was diagnosed "using the recognised guidelines with ME". In the UK, that could mean almost anything. For us to understand whether she was dealing with the same condition any of us are, we need to know exactly which guidelines you are referring to. Was it the Oxford criteria, Fukuda, the CCC, the ICC, or some other? Who was the doctor who diagnosed her using that criteria? The different criteria tend to identify different illnesses, so knowing which was used for your daughter would allow us to evaluate whether her successful treatment is likely to work for any of us as well.

Just as a matter of interest: you say you are a clinician -- in what specific field? It's always encouraging to hear about a medical person with personal experience with ME. How has your daughter's experience altered the way you practice?

 

[Hip]

You say your daughter was diagnosed "using the recognised guidelines with ME". In the UK, that could mean almost anything.

Why do you say that? The NICE Guidelines (2007) for clinical diagnosis of ME/CFS by NHS doctors are these.

 

[SOC]

Why do you say that? The NICE Guidelines (2007) for clinical diagnosis of ME/CFS by NHS doctors are these.

Yeah, and those Guidelines cover a huge range of possible illnesses while denying testing that might clarify some alternative diagnoses. Yes, people with ME would probably be diagnosed with "CFS/ME" by those guidelines, but so would people with many other illnesses. Basically it's persistent fatigue plus one other symptom.

We can agree to disagree, but I don't believe the NICE Guidelines clearly define the illness we know as ME. Someone could have straight-up TMJ, or primary dysautonomia, for example, and meet those guidelines. That doesn't mean they have the neuro-immune illness defined by the ICC.

 

[Hip]

That doesn't mean they have the neuro-immune illness defined by the ICC.

I assumed the CDC criteria were generally used in the US for clinical diagnoses of ME/CFS by an MD, not the ICC or CCC. The NICE guidelines for ME/CFS diagnosis are pretty similar to the CDC criteria.

As has been discussed in other threads, the very strict CCC or ICC definitions are most appropriate for research studies, to try to ensure your cohort are all ME/CFS patients; however, the CCC or ICC may well be a little too strict for clinical use, as they may actually exclude some ME/CFS patients.

 

[IreneF]

The problem I see with the NICE guidelines is the fatigue plus one other symptom. My original complaint had nothing to do with fatigue. Now it's a major symptom, but my symptoms have changed over time.

You can catch a lot of fish using that NICE net, but they won't all be the same fish.

 

[Hip]

The problem I see with the NICE guidelines is the fatigue plus one other symptom.

I know what you mean.

The NICE guidelines say "healthcare professionals should consider the possibility of CFS/ME if a person has [fatigue plus 1 or more of the following symptoms]", whereas the CDC definition says "cases can be classified as CFS if the patient [has fatigue plus 4 or more of the following symptoms].

So the CDC definition gives a precise (but arbitrary) threshold point of 4 additional symptom for diagnosis, whereas the NICE guidelines give the more nebulous instructions of considering the possibility once at least one additional symptom is present. I prefer the CDC definition myself, even though the threshold of 4 additional symptoms is arbitrary (what if you only have 3, does that mean you can't have ME/CFS?).


By the way, has anyone noticed the error on this CDC CFS definition webpage? The error is where it says "if the patient meets both of the following criteria", and then goes on to list three criteria! I wrote to them a while ago about this error; they acknowledged my email and replied to me, but have not fixed the webpage.

 

[Hip]

Hi all

As the mother of Hannah described in Dr Amir's link I feel I have to comment on this blog. I have nothing to gain in doing so except to share our experience. I am a clinican by background and my beautiful daughter became very suddenly unwell and was diagnosed after many hellish month using the recognised guidelines with ME. By pure luck we met Dr Amir and a more caring and competent man you would not meet. He was the first clinican, and we saw many notable leads in this area to fully examine my daughter from top to toe and showed us immediately the problems with her anatomy leading to her significant problems.

He showed me the asymmetry in her body and explained the anatomy and physiology behind this, which made total sense. Despite all the millions spent on research there is no knowledge cause or treatement and that surely can't be right with all the technology now available

My daughter now has gone five months feeling great until this weekend when the latest appliance has caused some symptoms to return but Dr Amir is dealing with this.

I would implore any of you dealing with this on a daily basis to consider contacting Dr Amir, don't know here we would be without him. I say this only because I am so grateful for his care and want others to have that opportunity also

Hi @Mari66

Thanks very much for detailing your experiences with Dr Amir, and for the update on your daughter's condition. I hope Hannah continues with her much improved heath.

One thing that did intrigue me in the article on Hannah's treatment was the mention of changes in her facial features and rib abnormality. Presumably those facial changes arose from the misaligned jaw; but how did this jaw misalignment occur in the first place, do you know? Were there any physical accidents in involved, like a sports injury? Or did the jaw misalignment occur gradually by some process?

I ask this because there may be patients on this forum who could have similar jaw misalignment conditions, and might want to know more details of what such a misalignment looks like or feels like, or what may have caused it.

Such patients would presumably be most suited for treatment by Dr Amir, and so it would be nice to get an idea about the nature of such jaw misalignments.

 

[Mari66]

Thanks all

I am a nurse who cared for many patients with ME, mainly severe cases. So when this NICE/ CCC diagnosis was given to my daughter and she was rapidly declining I was devastated. The more I think of the diagnosis based purely on symptoms, which are obviously different for everyone and are similar to many other diseases the more Dr Amir's findings make sense. His diagnosis is based on physical examinations and visual signs of altered anatomy and physiology which is something that can be dealt with, something I have seen in discussions with his patients in the waiting room, the stories are amazing.

As to the cause. No injuries at all, no previous ill health at all, My daughter had many teeth removed and braces put in place as a teenager for cosmetic reasons and as soon as these were removed her teeth became very misshapen. She may have had underlining lack of jaw development also. When Dr Amir first saw Hannah and showed us in detail her jaw abnormalities I was astounded and indeed checked all members of the family and found Hannah's was the only one who was grossly abnormal

Best wishes to you all