CFS on M&J Show

Chronic Fatigue Syndrome
#1

For those who didn’t get a chance to see the show …

They only gave it about 10 minutes. Started with the Yuppie Flu/Shirker
Syndrome accusations, but then admitted that CDC has now acknowledged how
devestating it can be, with theories of genetic pre-disposition and toxic origin. A
telephone survey showed 1-in-40 adults may have CFS.

The guests were Shanley Crutchfield, a 21 y/o girl; Brian Bernard, a 13 y/o
boy, and his mom Dr. Donnica Moore; and Dr. Mark Siegel of NYU Medical School.

The girl described it as “utter exhaustion”. The boy asked his mother “do I
have cancer or AIDS?” because he thought he was going to die. Dr. Siegel says
(as I do) that it’s both under- and over-diagnosed (i.e., people who have it
get misdiagnoses of something else, and people who have something else get
misdiagnosed as CFS), and stressed that early intervention makes a difference.
Unfortunately – like CDC’s website – he didn’t say what intervention. (The
only early intervention I was offered was anti-deps, which we know are
totally useless.)

It worked out that in the audience was Kathy Rabin, who was a lawyer at
Massachusetts General Hospital when she was struck in 1990; as a result she had
access to top specialists. Juliet observes “You went to Harvard and Yale; you’re
not lazy.”

Being a doctor herself, Dr. Moore had access to all 3 of the top CFS
specialists for her son. The only one she mentioned by name was David Bell. As she
was asking him the question, the answer dawned on her, that the reason this is
most diagnosed in overachievers is that “only overachievers have the
credibility” to be taken seriously that they are not lazy.

Dr. Siegel did bring up the problem of symptom overlap with depression, as
well as depression caused by the limitations imposed.

I think we all need to go to the MandJShow website and thank them for making
the point that it’s real and not just an excuse.

Next: we inundate Oprah and Dr. Phil’s websites with requests for a full-hour
show with Bell, Peterson, Cheney, Klimas, Jason and Komaroff talking about
the science behind it.

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#2

Great idea about Oprah and Dr Phil!

Keep up the good work.

Regards

Kingfan

#3

In a message dated 8/7/07 8:13:51 PM Pacific Daylight Time,
cfs-cpt5370@lists.careplace.com writes:

That’s exactly what Im wanting to know about early intervention. I wonder
if that is only really said as the fact IS more people do NATURALLY recover
from CFS in the first year or two…then after that time.

That’s one of the problems with CFS – we really can’t be sure when
improvement is due to taking X and when it’s coincidental.

However, overall, the people who recover best are those who recover quickest.
Time after time, they have found that Treatment X works only on those who’ve
been sick less than 5 years.

My question has always been, since I recovered enough to work full-time for
12 years, is this relapse a second 5 years, or was my 5 years up in 1992?
Unfortunately, at this point, if this relapse is a separate 5 year period, my 5
years are up. (Currently approaching Year 8.)

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#4

"Dr. Siegel says
(as I do) that it’s both under- and over-diagnosed (i.e., people who have it
get misdiagnoses of something else, and people who have something else get
misdiagnosed as CFS), and stressed that early intervention makes a difference.
Unfortunately – like CDC’s website – he didn’t say what intervention. "

That’s exactly what Im wanting to know about early intervention. I wonder if that is only really said as the fact IS more people do NATURALLY recover from CFS in the first year or two…then after that time.

So in other words… different therapies if prescribed in this time… it is more likely to see recovery in the ones taking them… as they were more likely to get better anyway!! than if something was prescribed after someones had CFS for a while.

#5

Thank you for your email. We are out of the office and will be back August
15th.
We apologize for any inconvenience and will return your email, or call, as
soon as we return.
Have a great day!

#6

My question has always been, since I recovered enough to work full-time for
12 years, is this relapse a second 5 years, or was my 5 years up in 1992?
Unfortunately, at this point, if this relapse is a separate 5 year period, my 5
years are up. (Currently approaching Year 8.)

nods… very good question. Im in the same kind of situation too. Fully like recovered at one point only to find myself relapse again.

Dr Cheney actually says that IT IS the usual course of this illness to after a time, go into “remission” for a time.

Another reasons why the CFS studies may be highly inaccurate as with those “cures”… how many have just gone into remission??? (esp with those studies done with CFSers who only have had it less than a few years who are reaching the normal time for like a remission to take place!!!) but a few years later, are very sick again.

All the studies NEED to be followed up far longer, many years later…to see how many get worst again or go back into all this.

Cheney says from there (once this remission period is over), it is just sheer luck if we can ever recover from here.
…

I thou keep on hoping that what happened the first time with all this… will go happening ago. If I get a repeat of my first time CFS stage, I have another 3-4 years until I will be appearing “fully” recovered. It took about 7 yrs the first time I got this before I went into “remission”. The remission period for me lasted a couple of years or so.

Will it ever happen again?? One thing I know to know if it does do… that I wont ever go thinking that I may not go into CFS once again. I now believe from my own experience and experiences from others…that full recovery is often only just remission.

Whatever went wrong in the first place which caused us to develop CFS is still there… recovered or not. Till they know the exact underlaying, triggering CFS cause, this wont be changed.

#7

From: CFSfacts cfs-cpt5370@lists.careplace.com
Reply-To: cfs-cpt5370@lists.careplace.com
To: lmtogas@hotmail.com
Subject: Re: [cfs] CFS on M&J Show
Date: Wed, 8 Aug 2007 00:52:29 -0400

#8

Thank you for your email. I will be out of the office until September 14th
and will not have access to
email. I will contact you as soon as I return.
All the best and have a great day.
Linda Tannenbaum