Re: P Vinci counters Van Pomeren about the hypothesis of overwork weakness in CM

[Guest guest]

Apparently Shy's team in the USA has also done a study that with more

rigorous analytics casts doubt on the Vinci conclusion about overwork weakness.

Please note that many in the CMT research community have found Vinci to bring a

" bias " to his research that they attribute to the fact that he has CMT. When

one conducts research, it is vital to establish controls, analytics and

parameters that do not " prove " your hypothesis but test it. I have been

informed that the majority in the European CMT research community (UK, Holland,

France, Italy) no longer invite Mr Vinci to their conferences, as they believe

that he " proves " rather than " tests " .

I find this sad. Please remember though that I am just passing along the

information I have been given. I will post the Shy study when I get a copy.

Please don't shoot my via email.

I have also asked for a copy of all relevant exercise / CMT studies for my own

information as I seek to help my coach and sports therapist to develop

programmes that will work for me.

Thanks for all the thought provoking responses to the article as well. I like

hearing about everyone's experiences and how we all manage our CMT - we all have

our own journeys and by seeing what we all do, it certainly helps me to

understand mine and adapt things for myself.

Best wishes from a sunny London,

Donna

www.myfitnessyear.com

[Guest guest]

Donna,

I have yet to see the study you refer to. I don't believe it has been published

yet. As for " a bias " , for a man to grow up with CMT and be so interested in it

that he becomes a medical professional in the field is quite impressive, as his

ability to speak and write in 5 languages. It is unfortunate that the

professional you referred to is unable to attend conferences because of the

progression of CMT, not due to lack of 'invitation' as you suggest. Can you

imagine a man so passionate about CMT research and helping others whose own CMT

prevents him from further work? For the benefit of the world CMT community this

is a great loss.

Again, we must all remember that *No One Professional " working in the " CMT

Global Arena " knows *ALL* about CMT. There isn't a doctor, physical therapist,

occupational therapist, trainers, coaches, etc., that knows it *ALL* and can

predict the course and nature of the disease in one with CMT. I can think of

several other medical professionals with CMT who are doing us all a great favor,

coming from the point of their own diagnosis as well as from a scientific one.

I wish you all the best with your training endeavors.

Gretchen

[Guest guest]

I have to agree with you, Gretchen.

>

> Donna,

>

> I have yet to see the study you refer to. I don't believe it has been

published yet. As for " a bias " , for a man to grow up with CMT and be so

interested in it that he becomes a medical professional in the field is quite

impressive, as his ability to speak and write in 5 languages. It is unfortunate

that the professional you referred to is unable to attend conferences because of

the progression of CMT, not due to lack of 'invitation' as you suggest. Can you

imagine a man so passionate about CMT research and helping others whose own CMT

prevents him from further work? For the benefit of the world CMT community this

is a great loss.

>

> Again, we must all remember that *No One Professional " working in the " CMT

Global Arena " knows *ALL* about CMT. There isn't a doctor, physical therapist,

occupational therapist, trainers, coaches, etc., that knows it *ALL* and can

predict the course and nature of the disease in one with CMT. I can think of

several other medical professionals with CMT who are doing us all a great favor,

coming from the point of their own diagnosis as well as from a scientific one.

>

> I wish you all the best with your training endeavors.

>

> Gretchen

>

[Guest guest]

Hi Gretchen,

I am sorry if I offended you with my comment about Mr Vinci.

As far as the Van Pomeren study I posted it in the folder " CMT and Exercise " -

as you know the groups do not circulate attachments but it is in that

folder. As I receive the pdf's of other exercise related research I will

continue to post things there. As I have tried to explain, the Van Pomeren

study is specifically testing exercise and muscles, not fatigue, and it is done

with a different analytical model than Mr Vinci used in his earlier studies. I

understand that Shy has re-done the work and had a similar finding. I

am not sure it is published yet but I have asked my medical team to send me the

studies for my files (and will share them).

According to the researchers I interact with on Reilly's team at the

National Hospital for Neurology in London, Mr Vinci WAS NOT INVITED to the

recent Rotterdam research conference. Tough for sure. But if a researcher

influences his findings with his passion, then the findings are skeptical. I

don't want researchers to skew findings - I want real results that are tested

thoroughly and dispassionately.

I've never met Mr Vinci, but I am sure that the exclusion from something you

both have and have researched for a long time is tough. I feel for him. I do

not question his intelligence or his commitment - but I don't think that bias

does not have a place in medical research. It was explained to me that his work

is viewed as " biased " from an analytical perspective.

On a more positive note, the CMTA got high praise from the medical researchers I

interact with. The chairman, his support for research, and his CMT, apparently

provides a great inspiration for folks.

I feel we can all be " scared " by the research without seeking clarification from

trained professionals. We can decide a course of action which might not be

right for us. And sorry if this is offensive to some, but a lot of people who

get a CMT diagnosis have gotten one because they have relatively advanced CMT.

That means when we meet or interact with others who have CMT, we can also be

" scared " by the personal experiences of other people. I know I find it

occasionally overwhelming for me, as I have a relatively mild expression of CMT

(although don't get me wrong - it is " relatively mild " and there are some

expressions of my CMT that are " in the middle to high range " ).

Because of this, I try to understand not " what I can't do " but rather " what I

can " . I do not take advice from " one source " - I gather all the information I

can, read it, and experiment with the large team I have assembled around myself

to see what works for me. CMT is a very personal condition, which manifests

itself according to our own individual genetic make up. A " one study fits all "

approach is probably not applicable to anyone, and I feel the researchers

realise this, and are increasingly focusing on " can do " or " positive impact "

hypotheses rather than " can't do " or " negative consequences " work.

Anyway, hopefully I haven't offended people by throwing different ideas into the

mix. Have a nice weekend.

Donna

www.myfitnessyear.com

[Guest guest]

Hi Donna,

Yes, I have read VP's article from our Files. Thank you for sharing it with us.

My initial reaction was a 'gossip factor' of who is * invited * to conferences

and who is not. I feel that is in poor taste.

I re-read the article again. VP had only 5 subjects in the lower extremity test,

and that included myotonic dystrophy and CMT. So how many had CMT? 1? 3? all? I

do not feel that is enough CMT research to discount overwork weakness. If I was

seriously concerned about overwork weakness, I would search out an expert, like

PV, who not only has CMT but has studied it intensely. I would do this because I

want someone who * knows * CMT, inside and out, from being 'there' and from a

scientific viewpoint.

Same thing if I wanted to see a geneticist about my inheritance of the disease.

I would turn to one who has CMT for his personal experience and scientific work

combined. This is not bias, this is a matter of prespective, which I look for in

all my doctors. And I also look for 'passion' in all their work. This is crucial

for me.

Scared about research? Not me at all. It is interesting what comes out and from

so many different countries and with such diversity.

Last November I attend a conference on CMT. 300 people, either with CMT, or with

a family member with CMT all met. While I had met people with CMT before, I met

many more and certainly have never been scared of the range of progression.

Maybe it is because my CMT is mild also. Or maybe because I had a childhood

diagnosis, and CMT is just part of who I am now. Or maybe CMT made me who I am.

I forged ahead, setting my goals, achieving, setting more goals and on and on.

CMT never stopped me from doing anything or going anywhere. There is nothing 'I

can't do " , there is not only " what I can do " but also " what I choose to do " .

Back to overwork weakness, I still feel it is a * fact * of CMT and those with

the diagnosis should keep in close contact with medical professionals who will

monitor muscle strength, through exercise, physical therapy, or daily life. I

just met with my orthopedist yesterday where we discussed adding some time to

the mountain bike (since weather is cooler) and also taking a swing dance class,

in addition to my usual aqua work. All of which is timed and spread out among

hours/times/etc., so no overwork weakness occurs. Believe me, after 47 years of

living with CMT, I know when I am about to * hit * the overwork line and stop

what I'm doing immediately.

Good luck all your activity. I hope you are running on grass, on a soft trail,

track or in sand, concrete can really screw up the back.

Gretchen