There is future hope
 

I read about this on another forum but i got the impression that this was actually old news? Not sure but i thought someone on that forum said the same thing had been done about 8 years ago in UK and when i re-read the john hopkins release I dont see where they actually say this is New discovery or when it was. Corrections welcomed if i misread please say so.

Does anybody have a link to the actual scientific publication?

Thanks, Mike. You may not like to know the following info because it means that this work has hit road blocks before, due to egos, funding and the FDA. ;)

The first one is the Drachman study. This work rides on the shoulders of the targeted chemotherapy research done in the past several years. Alice could tell you about that.

http://www.ncbi.nlm.nih.gov/pubmed/22769060

And I'm sure a lot of you are familiar with the work of Dr. Blalock in regards to attempting to get a vaccine for MG. There's been a "block" of his work, I believe due to the fact that the big guys (like JH and MC) wanted to come up with something better so they could get the credit.

http://www.ncbi.nlm.nih.gov/pubmed/21861992

Here's some history on that.

http://www.uab.edu/medicine/neurobio...ty/66-eblalock

http://online.wsj.com/article/SB1000...342139200.html

These are relatively related.

http://www.ncbi.nlm.nih.gov/pubmed/22981737

http://www.ncbi.nlm.nih.gov/pubmed/22941261

http://www.ncbi.nlm.nih.gov/pubmed/22952904

http://www.ncbi.nlm.nih.gov/pubmed/22689047

http://www.ncbi.nlm.nih.gov/pubmed/22642809

http://www.ncbi.nlm.nih.gov/pubmed/22626443

And this is for you MuSK patients.

http://www.ncbi.nlm.nih.gov/pubmed/22396395

And what they're working on to help determine severity of MG. As if we can't figure that out without a study! ;)

http://www.ncbi.nlm.nih.gov/pubmed/21861992

It's quite simple.

All you have to do is turn into a mouse. :catalan2:

(or if you have MuSK MG you can turn into a Musk Rat).

And then not only will you be cured of MG, but of many other diseases.


As I said elsewhere, the gap between preclinical studies and clinical trials in MG is enormous and incomparable to any other disease that I know.

Too funny, Alice. And what I find really funny is that MG is a progressive and debilitating disease when they want money for their research but it's a well-understood disease and easy to live a normal life with when they're discouraging us from getting social security disability.

Thank you for sharing this article! It does give us hope and all others who suffer from autoimmune diseases!:)

Yes, I noticed the same.

It makes you reach the inevitable and only possible logical conclusion- this is a very debilitating disease in mice (and hence justifies all this mouse research), whereas in humans it is a very well understood disease and easy to live a normal life with.

so, maybe (since our illness is quite debilitating) we are mice and just don't know it? ( I mean if we can be in "remission" without knowing it, everything is possible).

I will go take a look in the mirror . Maybe there is hope for us then...

I really do miss eating cheese.

I think this needs to be put on T-Shirts -- and on coffee cups -- and on posters -- and on.......

Oh my GOODNESS!! The BRILLIANCE of this statement is just making my head spin. Really!!

Here are some doctors who may be less interested in mouse research and better predisposed to treating humans properly for MG:

http://www.worth1000.com/entries/10505/franky-and-benjy

Heat Intolerant, That was seriously funny. Thanks.

Mike, I guess we're all in the need of some sarcasm and laughs. That does NOT take away from your message of hope! There's always hope. And I appreciate that you looked for it and gave it to us.

:hug:
Annie

There is a lot of hope.

I personally don't think the answers to MG are going to come from MG research.

I count more on research being done on the effect of exercise in various medical conditions.

http://www.youtube.com/watch?v=nL49D...layer_embedded

On research being done on lymphoid malignancies (which leads to a better understanding of the immune system and better ways to treat diseases effecting it).

Alice

Thanks for the link, video lecture was very interesting. Please do share if you come across any others of similar nature. By the way got me thinking seems CFS is very similar to MG, does CFS respond to mestinon? If seronegative does abnormal sfemg provide conclusive evidence that mg and not cfcs?

Steph.

There have been a few reason why I became interested in CFS lately.

One, is that I started to think that if MG is so different than what is written in the medical text-books, than possibly this is true for other diseases.

Another is that I met quite a few MG patients who were initially diagnosed as CFS. So, I thought there has to be some overlap at least clinically.

There are very few studies looking at the utility of diagnostic tests (such as antibodies and EMG) in MG. But, in all of those studies there is a significant group of patients (at least 25%) who have clinical symptoms of MG, do not have MG (as their tests are normal), but have no other alternative diagnosis. Such patients are "diagnosed" with CFS, functional neurological disorder etc.

MuSK was found after the SFEMG test was established as the "gold standard". Neurologists know that the SFEMG results in MuSK patients are very different than those in AchR patients, but as a diagnostic SFEMG is considered the gold standard they only mention it very quietly. (like for instance in a conference abstract which only a few neurologists will see and is never published).

I found very few "undiagnosed" MG patients in MG support groups. When, there should have been at least 1/4 patients (according to the medical literature which shows that 1/4 patients with MG symptoms does not have MG). So where are those?

I also asked myself where would those patients be referred? Obviously-psychiatrists.
So, I started to look at the psychiatrists who are interested in those entities.
It was quite interesting to find that one of the leaders in the field of CFS in the UK is a psychiatrist who in the early days of his training saw all the patients that the neurologist thought had nothing physically wrong with them.

He found a significant resemblance between their symptoms to those of patients with MG. But, they were similar to patients with MG who also suffered from "depression".

So, this led to the inevitable conclusion that CFS has a significant psychiatric component.

In his land mark paper (which is one of the most cited papers) he compared patients with CFS to a mixture of patients with MG and other neuromuscular diseases. There is not data regarding the severity of disease of either group.

So, I personally believe that at least some of the patients with so-called CFS are patients with MG who have normal tests.

Regardless, there is currently much more clinical research in CFS than there is in MG. There is not even one single study on the effect of exertion on MG patients, nor is there any attempt to assess the true functional abilities of MG patients. Yet, there are numerous such studies in CFS.

Even Rituximab has been studied much more extenesively in CFS than it was or is in MG.

That is why I have a lot of hope from the studies done on CFS.

Thanks, Alice - this was really interesting to watch especially for me, and I also remember your previous references supporting a similar theory for testing MG.

Pingpongman – I hope it´s OK to go off on a little tangent here for a minute?

These are the things I found interesting in the film: Stressing the system to detect the pathology instead of giving long questionnaires to patients! Normal people do better on the 2nd physical test. CFS patients are less efficient processors of oxygen and do significantly worse after test-retests; They felt guilty testing patients with extended exercise as often they ended up hospitalized; Redefining the concept and parameters of exercise for those who come with athletic backgrounds is surely relevant here with MG.

My own CFS/ME paths crossed with myasthenic paths after gentle swimming with 4 weeks of post exertional malaise as a result, and another occasion with muscle tear when gentle swimming caused muscles to quit totally whilst trying to get to the edge of the pool.

I have made a guess based on my experiences about one type of CFS (last one on slide)

Mitochondrial CFS + glutathione (in form of undernatured whey protein) + rest creates a delay in muscles reaching their anerobic threshold AND promotes a significant shortening of post exertional malaise

This is not a proven theory, it is just my experience which took me from a time when I reached my anerobic threshold just trying to get out of bed in the morning all the way to being able to play football with my son 2 years later. I am 100% certain that had I taken the only option that was angrily offered to me at the time ´cognitive based therapy´ then I would not be here now typing this message in the spirit of hope on Pingpongman´s thread But instead, bedridden with the curtains closed to the outside world.

It is also hopeful I think that severe physical and cognitive malfunctioning was corrected not by CBT of any type but by metabolic intervention!

Anacrusis

PS Alice - I saw that series he mentioned by Stig Larson - in Swedish :):):)

Anacrusis

I loved the subtitled in english series much more than the version done in english! Turned my dad on to it and he evem bought the trilogy!

Alice

Have you tried doing your own informal testing, tracking on yourseslf? I am thinking if nothing else we can learn to exercise, use our energy smarter!

On a side note to illustrate my own previous prejudice we have at least here in states about CFS, i distinctly recall a client coming to see me around 2000 who told me she couldnt do anything because she had fibromyalgia and cfs and at the time i thought she was just lazy! Same holds true for my perception of thyroid issues, i used to think people who said they were overweight bcs they had thyroid problem were just lazy and ate too much. Not proud i thought that but i did!

Sorry, I missed that part of the lecture, so don't know what it is about.

This is what I saw in Swedish.

http://www.youtube.com/watch?v=B7UmU...eature=related

Yes, this was my approach.

I realized that I have to learn how to redefine my limits.

I had a formal Exercise test at some point (my pulmonologist wanted to gain a better understanding of my respiratory difficulties) but at that time they didn't know how to interpret it.

I tried to see if my limitations were only because of my respiratory difficulties (by walking on a treadmill connected to my respirator).

I asked a marathon trainer (who is also a respiratory/sport's physician) to make me an exercise plan, based on my VO2 max, but similar to what he does with marathon runners.

I checked the effects of various nutritional interventions.

And I am still learning.

I believe in the Cognitive part of CBT.

I think that when a patient better understands his/her illness they can live much better with it and have much more control over it.

But, this has to be a true understanding, or else it is counterproductive.

Disinformation is worse (in my opinion) than no information.

I often see patients in my clinic who were never given a good explanation regarding their medical condition/ treatment. Just giving them proper information in a way they can understand leads to a significant difference in their well-being and also translates to better outcomes in measurable parameters.

That is why it was so important for me to know the truth about my illness and not accept BS explanations.

BTW, this is nice proof that some patients with MG really go into remission.

http://www.eveningnews24.co.uk/news/...opes_1_1336380

You can't run a marathon with active MG. And it doesn't have to do with will power or a "positive attitude".

Maybe if there will be a better understanding of muscle function and the immune system, we will be able to understand what makes some respond so well to treatment and others not.

And this is a true source of hope.

You should definitely stick with that level then! - This one might not be quite that sweet! :wink:

http://www.youtube.com/watch?v=BgczAEEEpuU