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From M.E. to You!

Newsletter To M.E. or not to M.E.
August 2009

For Past Issues, click here

For M.E. Information, click here

 

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SUPPORTING OUR HEROES 

Dee has started a new group for those who have loved ones in the military who have been overseas, are going overseas or are there now.  It's a support group which will include the latest news, coping tips and support through these incredibly difficult times.  Please, click here to drop by to lend your support.  And be sure to pick up her banner and spread the good news! 

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MEMBERS WHO MANAGE OTHER GROUPS

We have many members who also manage their own groups (hence their absences sometimes lol)   In fact, we've started a page of banners for their groups in case any of you would like to check them out. 

If you are a manager of another group and we don't have a banner for your group, would you please post here ( http://tomeornottome.yuku.com/topic/3499 ) with the name and url of your group so we can advertise for you? Thanks! Teri will make a simple banner for you and then delete your message.  It would also be great if you wanted to start a new thread in that forum with the title of your group telling us all a little about it.  You could post one of your own banners in that thread. 
 

ARTICLE OF THE MONTH

Switch off, switch on
Robert Matthews


Two British scientists are treating rheumatoid arthritis and multiple sclerosis by destroying patients' B-cells and starting over with fresh ones. Visuals Unlimited / Corbis

We’ve all done it. Faced with some malfunctioning gadget or computer, we pull the plug on it, switch it back on – and find it works perfectly again. Known to the cognoscenti as the “hard reboot”, it’s a trick used more often in desperation than insight. Now it’s emerging as a promising new approach to treating some notoriously debilitating medical conditions. Recent clinical trials have shown that “rebooting” our disease-fighting immune system can dramatically improve the condition of patients with multiple sclerosis and rheumatoid arthritis. And according to a study published last week, it may even bring relief to patients suffering from the enigmatic condition Chronic Fatigue Syndrome, affecting millions worldwide.

There is a growing sense of excitement about the rebooting technique. But behind it lies an inspiring story of how a pair of scientists overcame indifference to convince the medical community of the merits of what is now called B-cell Depletion Therapy (BCDT).

B-cells are a type of white blood cell which randomly churn out so-called antibodies, many of which prove useful in destroying disease-causing pathogens. Yet, like every defense system, mistakes sometimes happen – and innocent bystanders end up being targeted. During the late 1990s, two medical researchers at University College London began to wonder if this “friendly fire” might hold the key to the debilitating disease rheumatoid arthritis (RA).

Affecting about one in 100 people worldwide, RA can strike anyone literally overnight, their immune system suddenly attacking their joints. The condition is excruciatingly painful, and for years there seemed no hope of a cure. Until recently, the prime culprit was held to be T-cells: white blood cells that play a key role in the disease-fighting immune system. Yet despite intensive study, no one could explain how or why T-cells should produce a lifelong ailment such as RA. Most tellingly of all, therapies targeting T-cells failed to benefit patients.

This prompted Professor Jonathan Edwards and Dr Geraldine Cambridge at UCL to ponder the possibility than B-cells might be to blame. Their idea was based on the fact some B-cells are known to make antibodies which inadvertently seek out and destroy healthy tissue. Normally, these would be destroyed by the B-cells themselves. But what if some of the antibodies by chance possessed the means to evade their own destruction – and go on to attack the joints?

That led Prof Edwards and Dr Cambridge to a radical new approach to treating RA: “rebooting” the immune system by destroying all the B-cells, and then starting over with fresh ones.

Fortunately, a compound capable of targeting just B-cells had just become available: rituximab, a so-called monoclonal antibody which homes in on specific targets like a heat-seeking missile. This could destroy all the B-cells, leaving patients to develop a whole new set free of the renegade variety that attack joints.

That at least was the theory, and with the standard T-cell theory not getting anywhere, the team thought it was worth bringing to the attention of other researchers. They soon found that new ideas aren’t always welcome in science – even if the old ones aren’t working.

Continued:  Click here
 

You might have FMS/ME/CFS if.....
You've got your pharmacist on speed dial.

 

CLICK THE KUDO'S!

If you like a post, click the heart to give it a kudo!

Have you given all your group mates a kudo on their profiles?

For directions (with pictures lol) click here. http://tomeornottome.yuku.com/topic/3605

NEW SKIN?

There is a new skin up on the General Message Board.  It's got a sidebar many of you have been missing from our MSN days.  Take a look and answer the poll, "yes", "no" or "yes, with certain changes".  If you click the third option, please reply with what changes you'd like to see!   Click here for the Poll. http://tomeornottome.yuku.com/topic/3609

BACK UP GROUP!

Yuku had nothing but problems the 30th and 31st of July.  People couldn't get to the site at all, got an error message or a white page.  Then there were those who could get there but not post.  And there were occasionally times when posting could be accomplished but the page wouldn't not refresh.  It was a nightmare. 

After this, when Yuku is having issues, we'll meet at the Aimoo site we have for advertising Yuku can get their issues are resolved. 

Go to http://cfsfriends.aimoo.com/ and join today.  That way it's an easy transition when we can't get to Yuku.

NEW MEMBERS IN JULY

WELCOME!

Cariad1256  I used to be a member of the MSN site but have been too busy to rejoin. I am married to Angelpam and introduced her to the old group after we met in Feb 2007.

My doctor says I'm tired due to the type of work I do, he doesn't know any other 53 year olds as busy as me so that's why I'm tired, nothing else. Nothing changes then.
Phil

P. S., those teeth aren't mine

angelpam  Hi to you all. Well think many of you will know who I am but for anyone who doesn't .....here goes.
I am 49 (just lol) ,mother of five, nana to two. Been married to Phil for 14 and a half months and glad to tell you we are still very much in love and very happy together.

I had to give up work last year in September because of depression and in November I had a nervous breakdown. Change of meds seem to be helping me to get back on my feet and am hoping to be back in work by the end of the year,  I finally got confirmation in December after waiting about 10yrs) that I have fibromyalgia.  At least now I know what I am dealing with.

It feels so good to be back in the group. I have missed you all.
Pam

Kimmi Hi all .. I'm from the USA .. South Carolina , I'm 41 and I'm married to a wonderful , caring Man . We been married 10 years this November . I have a daughter 21 and a son 18 . I also have a grandson who's 18 months old. He owns my heart !

I have had fibromyalgia for about 4 years and they finally diagnosed me for sure with it the first of August, last year . Since then I have gone down-hill kinda fast with it . I have tried a few different kinds of meds but right now I'm on Lyrica, a muscle relaxed and a motion sickness pill as to I stay dizzy headed Arggggggggggg .... I usually have a bad flare up around every 2 weeks and I'm down for a few days. The times I'm not in a flare up I'm hurting in on place or the other :( .... I have facial pain as well with this. I have some of the worst headache's also ...

Pearl   Hello Group,
My background is in Holistic Health and Spiritual Counseling.  Though, today, I am now retired I continue to be interested in any and everything that helps one to heal oneself if at all possible.

I am also dealing with a lot of physical pain and associated damage from the chemo given to me for ovarian cancer some years ago. I am a survivor and that is now under the
bridge but I do have the pain and the fatigue and the this and that that come and go all the time.

I also have my own Spiritual Group here on Yuku and I have been meeting some wonderful friends through the Yuku grape vine. This is how I heard of your group.

I am looking forward to meeting you all.

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You know you've got brain fog when ... I'm sorry, what were we talking about?

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OUR NEW MODERATOR

You may have noticed MaiaG (Mellie) posting dailies recently.   Our eternal thanks for her help and enthusiasm!

Have you read about all our moderators?  You can find their write ups by clicking here.

NEW CHAT BOX

We're having a really good time with the new chat box found at the top of most of the pages of our group.  There are still a couple of glitches Teri will be trying to iron out.  The smilies don't work and we still are able to save only 20 of the comments.  Just remember, the comments don't stay long so they won't take the place of posting lol.

HAVE YOU BEEN AWAY?

Sometimes, life gets the best of us and we miss going to the computer for a few days at a time. I know when I'm traveling (Teri) I always get behind on what's going on with folks.  When we brought the To M.E. to Yuku, we started a forum for all the Chit Chat threads so it would be easy to catch up with our members.  So, if you've been away and are feeling a bit out of the loop just go to http://tomeornottome.yuku.com/forums/109 and it's easy to catch up!

STAFF ONLINE/OFFLINE

You can always tell when there is a staff member online now.  At the very bottom of the page is an indicator.  If you need one of us and we're there just give us a shout in the shout box.