Update on town CFS Study

[Guest guest]

See below for Update on town CFS Study

Though I've been a member of CFAlliance for a very long time, I

haven't really kept people up to date or participated much because of

my involvement with DC area activities, and the email lists for the

groups. Since someone wrote me to tell me I'm being talked about on

the list today, maybe I'll just take the opportunity give a few

highlights of my recent activities.

I'm still in touch with biomedical researchers, email with them

somewhat regularly.

I still go to the research conferences when the timing and location

works out -- including attending every minute of the 2003 IACFS (now

IACFS/ME) conference.

I still go to CFSAC meetings to give encouraging words to researchers,

though not today's. I was there last May.

(I did help several people get to CFS Advisory Committee with

reminders and directions.

I helped them edit their testimony, keeping to what they wanted to

say).

I still attend CFIDS Lobby Days and support the agenda of the event,

not my own.

I announce the Empty Chair project for PANDORA of Florida and other

national group projects and events to the NOVA email list called

CFSupport.

My group hosts some biomedical researchers, some well respected CFS

and FM clinicians.

I still promote research and advocacy, with letters, with articles,

with media appearances.

I show people the technical journals they can order if that is their

main interest.

Off the top of my head...

Nov 2003 - hosted Dr. De Meirleir of Belgium

June 2005 hosted Dr. Bateman in 2005 with Staci s at the 1st

Know More CFS.

In Nov 2006 I appeared on NBC national news for CFS and talked about

how hard it is to live with.

In June 2007 Dr. Pociniki who presented at a Know More CFS conference

also addressed our group.

In December 2007 I appeared in a TV spot with FM brain researcher

Wood, MD, at the request of the NFA.

I attended the Nat'l FM Association January 2008 press conference, it

was fun to catch up a little with FM researcher Dan Clauw who I don't

see as much since he moved from DC area to MI.

My latest piece in The CFIDS Chronicle (Summer 2007) contained many

warnings about bad talk therapy.... and some wisdom in case you need

some for coping with life changing events such as disability.

Next year, Dr. Cheney will be speaking at the No. VA Group in spring

if all goes as planned.

I look forward to hearing his presentation. Haven't seen him for awhile.

With advancements in my health, and especially cognition though I

still use a laptop in a recliner, in 2006 I took over and expanded of

the NOVA website though I'd never worked with web stuff before. It

includes research and prevalence Info. It has navigation and

simplicity meant to be easier for people with CFS and FM.

I still write technical articles about Orthostatic Intolerance and

other subjects, which appear on the site. The NOVA website also lists

books and videos, articles, more on a varitey of subjects and

viewpoints for CFS, FMS, OI, Lyme, IC, Vulvodynia and similar. It has

an extensive treatment section and a mainly DC area practitioners list

online which is updated regularly. It lists western medicine info,

disability info, eastern info,other alternative and complementary

stuff, but is still mostly mainstream. Mostly only Body, though some

mind stuff, and some body-mind, and some spirit for those who like that.

Yes, I like to talk about what helped me most. No it wasn't checking

into a clinic and no, it wasn't psychotherapy. None of the written

articles about my experience state that. Yes, some prescription

Chinese herbs are involved (still ongoing after 4 years) and many

other things.

When I present, I do like focusing on what people can do on their own

at home for free while they are waiting for the research to pan out.

When I present (and wow, I can do public speaking now, on my feet even

sometimes -- I couldn't do that even before CFS, before I got mono

and all the other infections leading to the years spent on the couch.

I don't have as much POTS or NMH now, but still enough to be

disabled), .....when I present, I make sure I share the stage with a

health professional who is trained in serious complex neurological

conditions.

But it isn't all I do. My activities have been increasingly focused in

many directions.

This month I worked with town University researchers in getting

the word out about the status of their CFS study, posting to NOVA Y!

group CFSupport a few weeks ago along with some patient stories,

sharing it with leaders around the country.

Here's the study info. If someone else posted it here already, sorry

to repeat.

Forwarding a note from town

Dr. Murugan K. Ravindran

Post Doctoral fellow

town University Hospital

3800, Reservoir Road, North West

Washington, DC 20007

work -

cell -

cfsresearch@...

October 2008

Hi Ms Elly,

Hope you are doing well and it was a pleasure talking to you again I

have attached the Informed consent, that had been recently approved by

our Institutional Review boards (IRB) [August 22, 2008]. [it is a 12.5

MB, many page file. Please write to Dr. Ravindran for a copy in you

are interested.]

Currently we have about 42 participants, of which 34 meet the criteria

of CFS. We need more participants for our study and we are targeting a

number that might be close to 75 CFS participants and 75 healthy

controls.

As I have mentioned to you, we are with the aim to detect those

specific proteins in cerebrospinal fluid and also are very keen to

observe and document the spinal pressures at the time of lumbar

puncture (spinal tap)

I also would like to mention to you that there would be two visits.

The first visit would just be the screen and it might take about 3-4

hrs.

The second visit would be for the lumbar puncture (spinal tap) and

after the spinal tap, the participant would be requested to stay at

our clinic overnight and then would have his/her discharge by next day

noon.

This study includes blood work for:

Sedimentation rate, Cardio-reactive protein, Thyroid stimulating

hormone, Rheumatoid factor,

Anti-nuclear antibody, Pregnancy test, HIV, Complete metabolic panel,

Complete blood count and differentials x 2, Serum Osmolality, Lipid

panel, Basic metabolic panel, Serum IgG, and Amino acids, quantitative.

Cerebrospinal lab tests: Glucose, Total protein, Cell count, IgG,

Albumin, Amino acids quantitative

Clinical testings:

During the screening visit:

Isometric hand grip test

( to check for the blood pressure and heart rate responses in

relation with mild contranction exercise)

Pulmonary Function testing.

During the day of lumbar puncture:

Lumbar puncture

Capsaicin skin test

Next day after Lumbar puncture:

Allergy skin testing

We also give one Acti-watch to wear on the Non-dominant hand, 24 hrs

for 1 week. We also give the participant a pre-paid fedex, so that it

would be easy for the participant to return the watch back after a

week's period. This acti-watch scores the level of fatigue and also

estimates, how well the sleep was for that 1 whole week.

Benefits from the study:

All your lab test results would be send to the residential address in

a 2 week period

As a thankfulness in participating in our study, we would give a $400

check.

--

Dr Murugan K.Ravindran