Request for interested people - CFS/Fibro support group

I have had a request to form a support group for people with Chronic Fatigue Syndrome/Fibromyalgia.

Before I commit our resources I'd like to know how much interest there is in the community.

If you suffer from or have an interest in these conditions and would be interested in joining an SL support group on Supportforhealing island please either reply here or drop me an IM inworld.

Many thanks

Zafu Diamond

Here in the UK, CFS is more commonly known as "M.E.", which is rather easier to type than its full name of Myalgic Encephalomyelitis.

Just thoguht I'd mention it. Although I don't suffer myself I know several people who do - none of them play Second Life though.

Good luck with your venture.

Lewis

Out of the blue, someone I hadn't spoken to for months emailed me a recent study.

"there is the the research document which shows a correlation between FMS, CFS & FMS, Please pass it on to all who suffer the ignoration of GP's to their condition. It is hard to understand, but you need proof that we are not all psychartriatric patients, and i am afraid that in this area and other areas I have communicated with their is so much ignorence by the medical proffesion.

A chronic fatigue syndrome - related proteome in human cerebrospinal fluid
Journal: BMC Neurology, 2005, 5:22, doi:10.1186/1471-2377-5-22, Published 1 December 2005
Authors: James N Baraniuk, Begona Casado, Hilda Maibach, Daniel J Clauw, Lewis K Pannell and Sonja Hess

NLM Citation: PMID: 16321154



Abstract:
Background: Chronic Fatigue Syndrome (CFS), Persian Gulf War Illness (PGI), and fibromyalgia are overlapping symptom complexes without objective markers or known pathophysiology. Neurological dysfunction is common. We assessed cerebrospinal fluid to find proteins that were differentially expressed in this CFS-spectrum of illnesses compared to control subjects.
Methods: Cerebrospinal fluid specimens from 10 CFS, 10 PGI, and 10 control subjects (50 mul/subject) were pooled into one sample per group (cohort 1). Cohort 2 of 12 control and 9 CFS subjects had their fluids (200 mul/subject) assessed individually. After trypsin digestion, peptides were analyzed by capillary chromatography, quadrupole-time-of-flight mass spectrometry, peptide sequencing, bioinformatic protein identification, and statistical analysis.

Results: Pooled CFS and PGI samples shared 20 proteins that were not detectable in the pooled control sample (cohort 1 CFS-related proteome). Multilogistic regression analysis (GLM) of cohort 2 detected 10 proteins that were shared by CFS individuals and the cohort 1 CFS-related proteome, but were not detected in control samples. Detection of >1 of a select set of 5 CFS-related proteins predicted CFS status with 80% concordance (logistic model). The proteins were alpha-1-macroglobulin, amyloid precursor-like protein 1, keratin 16, orosomucoid 2 and pigment epithelium-derived factor. Overall, 62 of 115 proteins were newly described.

Conclusion: This pilot study detected an identical set of central nervous system, innate immune and amyloidogenic proteins in cerebrospinal fluids from two independent cohorts of subjects with overlapping CFS, PGI and fibromyalgia. Although syndrome names and definitions were different, the proteome and presumed pathological mechanism(s) may be shared.

ACKNOWLEDGEMENTS:
We thank the CFS Research Foundation, Hertfordshire, UK, and Royal Brompton and Harefield NHS Trust for financial support. We thank Dr F Boulton, Ms J Williams, Mr P Rogers, Ms D Carr, and the NBS teams of East Dorset for their help in enrolment and sampling of normal blood donors; Dr A Bell, Consultant Haematologist, Poole Hospital, for use of laboratory facilities for processing of blood samples immediately after collection; and Dr J Sherlock, Applied Biosystems, for advice on Taqman PCR.

This paper is dedicated to Dr David Tyrrell CBE, FRS, who died on 2 May 2005, aged 75, and who gave so much of himself in support of this research program and all its participants



http://www.co-cure.org/Baraniuk.pdf "

Thought I'd pass that on as it may be of help to someone in this group.

Regards

Lewis

I'm interested. I have fibromyalgia.

Thanks for the info Lewis.

I'll contact you in world in the next few days MeilLin - thanks for your interest.

Zafu

I have this condition (albeit virtually gone) and would be happy to help in any way I can, though I'm a bit limited with time just at the moment. I set up a newsgroup a few years ago for people in the UK; I'll pop back in and see what interest there is.

Ty Garnet, much appreciated

Could be a useful opportunity to advertise the free basic account to all those on the newsgroup, so that they can meet other people with similar conditions online in these meetings, as I know that for many sufferers just getting ready to go out of the house to a meeting drains them to the point that they can't go.

I know that social isolation and a feeling of uselessness can often develop from such debilitating conditions, and SL may be just the thing they need, to pick up and put down as and when required.

Lewis

Hi all single mom w/ 2 kids and fibro/cfs/all the other stuff that comes with the territory.....i have searched groups every now and then for a fibro group iw. i also have entertained thoughts of starting one, but, like so many things these days i never seem to get around to it. i have a very good friend in sl who also has fibro but i think it would be awesome to meet other people who understand what i go through. so count me in

/me raises her hand, diagnosed in 1988...

Hello friends,
I don't have Fibro or CFS, but came across a fabulous workout technique called T-Tapp which helps one overcome all the negative aspects of these conditions. Some of the T-Tapp instructors were also been diagnosed with it but say the workout has totally changed their lives. I personally have done the basic workout, which just takes about 13 minutes each day and it's really something one can do at one's own pace and it does not put any strain on or tax the body.

Do take a look at the T-tapp website at www.t-tapp.com and also read the story of one of the instructors who has Fibromyalgia at http://www.t-tapp.com/trainers/sue/

Speaking from personal experience, I know the workout is very effective as a workout, but perhaps some of you that are interested can ask specific questions in the t-tapp forums on how it works if one has either of these conditions.

I have always believed that miracles do happen and I wish each of you the very best of luck in discovering your very own miracles.

Hugs,

Ayesha
p.s. I am not associated with the T-tapp company in any way. I did buy their basic workout dvd and other instructional material and recall from the discussions on those DVD's that it specifically helps people with these conditions.

Thank You.

I have FM and a few other spinal problems and would love to see this explored.

I have Fibro, was diagnosed about... sometime over 15 years ago, the fibro-fog prevents me from remembering how long it really has been. I think a support group is a great idea.... people can share what works for them.... although we must remember that this syndrome does affect every person differently... it's still nice to have someone to talk to. I'm tired of FM dictating my life. :-/

Count me in!

I will never forget when I was diagnosed. Too many bad things happened to me that year. On top of that I kicked the doctor in the shins when he was checking my tender spots. Of course I did drive by his office three times before I found the place and I had been there before. Wicked disease isnt it.