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Paul Winter Imagine...

Imagine what it would be like to feel ill, almost poisoned every single day. The smallest task leaves you feeling weak, nauseas and dizzy - so much so that you have to lie down and rest. Imagine what it would be like to have to wear a deep sea diving suit complete with weighted boots. But unlike a normal one, the arms are heavily weighted too. Think what it would feel like to have to do your daily tasks in such a suit. Think about walking or doing simple tasks like washing, getting dressed or e… Continue

Added by Paul Winter on November 29, 2009 at 6:00am — 5 Comments

Kati Disabled

So this morning at 9 AM my adjustor phones. I am sleeping- but interested in what she gotta say. She says she is going to phone later. These days I sleep till 11. Last night I slept 12 hours. Lately I had trouble falling asleep for some reason, and I would find myself still awake at 3 AM. Anyways, not the purpose of this blog post. They have "reopened my case". It sounds like I will get retroactively paid from May and on. It sounds like my functional assessment may have left an impression sinc… Continue

Added by Kati on November 27, 2009 at 3:49pm — 6 Comments

Paul Winter Finding The Right Words - Using The Right Images

I have been thinking about communication, especially in relationship to ME/CFS . You may not think this is a very important subject, but how we communicate what is happening to us, regarding this disease, is very important. ME/CFS has been given very bad press over the years. The terms 'Yuppie flu' and 'Chronic Fatigue Syndrome' have trivialized it's seriousness. But I also think people with ME/CFS haven't always helped themselves in the way they have communicated what is happening in their bodi… Continue

Added by Paul Winter on November 27, 2009 at 5:33am — 10 Comments

Laurel B. Survivors

From my blog at http://dreamsatstake.blogspot.com You often hear the word survivor used to describe someone who has overcome a life-threatening illness or situation. There are survivors of cancer, strokes and heart attacks. There are survivors of natural disasters, poverty, rape and of war. There is no doubt whatsoever that every one of these brave and triumphant individuals should be celebrated. They have each earned their badge… Continue

Added by Laurel B. on November 26, 2009 at 10:00am — 1 Comment

Sarah G great opportunity to get media interested

Today I am being interviewed over the phone by a journalist for ProPublica news service. We are going to talk about my healthcare "journey" thus far, especially insurance issues and access to care. I'm sort of nervous, it's exciting, but probably not that big of a deal in the grand scheme of things. We may have follow up interviews after this one. I have some thoughts about what I want to talk about based on how she told me it would go, one important thought I have had is that comparative effec… Continue

Added by Sarah G on November 25, 2009 at 10:33am — 4 Comments

Sharon www.cdcchatter.net - NEW! CDC Credibility Questioned

A new topic is out on the CDCchatter.net website that asks about the CDC's credibility problem. It's new today and it seems that comments have not yet been posted. Now remember, the public CAN make comments BUT, if a negative personal attack is made (against Bill Reeves, we all know), then the Webmaster will remove the post and comments. So...Read and post but be careful about attacking anyone at the CDC. I have a GREAT article written back in 2008 that is a MUST READ.… Continue

Added by Sharon on November 22, 2009 at 5:49pm — 3 Comments

Khaly Castle CFIDS Association - What do you want to say to them?

I have been involved in a conversation with Brian Smith, board member of the CAA. He has become aware of our growing dissatisfaction with the organization, and wants to know what he personally can do to help. He has stated that he is not speaking for the CAA, just for himself. I suggested that we take a poll on what people are unhappy about and would like to see done differently, and that perhaps he could take the results of that poll to his next board meeting. So, what do you want to say to h… Continue

Added by Khaly Castle on November 22, 2009 at 3:25pm — 32 Comments

Mary Schweitzer A Primer for XMRV and XAND

A primer for XMRV, XAND, M.E. - and CFS By Mary Schweitzer, Ph.D. On October 9, 2009, an article was published by Judy Mikovits et al in the highly prestigious research journal Science announcing the findings that a newly discovered retrovirus, called XMRV, had been found in 67 percent of a sample of patients diagnosed with CFS over a period of 25 years. There are only 3 known human retroviruses: HTLV, HIV (which leads to AIDS), and now XMRV. The importance of this finding cannot… Continue

Added by Mary Schweitzer on November 21, 2009 at 8:00am — 15 Comments

lee w Health Care Online

I have heard Indiana heart physicians have a reputation in helping. International travel insurance and sometimes my health savings account has been necessary to resolve and maintain the health situation. It… Continue

Added by lee w on November 19, 2009 at 3:58pm — No Comments

geoffrey keith brown incompetant or just not interested

hi how many of you have been to your doctors and asked about the xmrv discovery only to be told [oh i havent heard about that] you give your doctor the available info and go back a month later to be told [oh i havent had time to read that stuff yet] what does that tell me has this happened to you cheers geoff Continue

Added by geoffrey keith brown on November 19, 2009 at 3:30pm — 4 Comments

Darden Burns Oral Systemic Balance

Last September I began Oral Systemic Balance treatment at Dr. Farrand Robson’s clinic in Tacoma, Washington. This groundbreaking treatment has put me on a slow and steady path of healing. I believe it may address the root cause of many chronic health conditions including chronic fatigue and fibromaylgia syndromes, TMJ, sleep apnea, insomnia and anxiety disorders. I was referred to Dr. Robson in February of 2007 by a Bowen Work therapist named Cathy Kruse. At that time my body so severely stresse… Continue

Added by Darden Burns on November 18, 2009 at 4:12pm — No Comments

Darden Burns Fibromyalgia Muscle Dysfunction

Fibromyalgia Syndrome remains a mysterious conglomeration of symptoms for which there is no definitive cause or treatment by the medical profession. The muscle condition characteristic of fibromyalgia is particularly poorly understood. To add to the confusion fibromyalgia patients are often referred to rheumatologists for diagnosis and treatment despite the fact that fibromyalgia is neither an autoimmune disease nor a condition of inflammation. So what exactly is fibromyalgia? “Fibro” refers to… Continue

Added by Darden Burns on November 18, 2009 at 4:11pm — No Comments

Darden Burns Strategies For Healing

Every person with chronic fatigue and/or fibromyalgia syndromes has a unique presentation of these conditions with various complications and sets of symptoms. There is no one treatment that can “cure” these syndromes or that is helpful to everyone however a combined approach of therapies and supplements can lead to an improved quality of life. I have listed below things that have been beneficial for myself and others. 1. Diet and Chemical Exposure Impaired detoxification is common to chronic fat… Continue

Added by Darden Burns on November 18, 2009 at 4:09pm — No Comments

Darden Burns Myths and Misconceptions

As a person living for years with a chronic undiagnosed health disorder I encountered many myths and misconceptions about health and illness. The first is the view shared by the majority of mainstream physicians that if the diagnosis of a particular health condition cannot be determined by medical tests and evaluation then the cause must be psychosomatic in other words originating from mental or emotional factors. I think nearly every person with Chronic Fatigue and Fibromyalgia Syndromes has ex… Continue

Added by Darden Burns on November 18, 2009 at 4:00pm — 1 Comment

Mary Schweitzer Written testimony presented to the CFSAC 29 October 2009 (Revised)

What is the purpose of the Chronic Fatigue Syndrome Advisory Committee (CFSAC)? Written Testimony presented to the CFSAC Department of Health and Human Services Washington, DC, 29 October 2009 Revised, 16 November 2009 Mary M. Schweitzer, Ph.D. [This is a slightly revised version of my presentation, taking the news of XMRC into account. The official version of my written testimony can be found here:… Continue

Added by Mary Schweitzer on November 18, 2009 at 2:00pm — 7 Comments

Dave Croll Vitamin B12

I got the results of my blood test that were done last monday,everything was normal, except this time there was one abnormality which I've never had before. My vitamin B12 levels were high,and the doctor told me not to worry and to stop taking vitamin B supplements. The only problem with that is.... I'm not actually taking any vitamin B supplements. So I have been sitting here trying to work out how I can have a high level of vitamin B12 when I'm not taking any vitamin B12, which is quite men… Continue

Added by Dave Croll on November 18, 2009 at 5:17am — 1 Comment

Rachael Murphy Financial impact of ME/CFS

Hi all :) I have a friend who works for a local newspaper in Boston, and I guess he got sick of hearing my constant rants about ME/CFS and the many injustices and indignities that go along with having this (forgive my french) crappy disorder. Thus he has asked me to write an article about ME/CFS, specifically about the financial implications i.e. being unfit for work/unemployment, being denied welfare benefits, living in poverty etc. The newspaper is involved heavily with the homeless, so that'… Continue

Added by Rachael Murphy on November 18, 2009 at 1:11am — 2 Comments

Dan Moricoli The Pocket Money Research Fund

Last June, the lingering thought that a fund raising campaign among, and within, those afflicted with ME/CFS began to gain momentum. We were in the midst of conducting a series of seminars entitled “Breaking Free of the Confines of Chronic Illness” when on impulse, a hat was passed to raise money for ME/CFS research. In just a few minutes, $230 was raised. There was no campaign, no structure, no idea as to what to do with the money. It just seemed to be a good idea at the time. Most impor… Continue

Added by Dan Moricoli on November 17, 2009 at 9:36am — 3 Comments

Carla Witsier Petition to demand XMRV testing in Spain (Spanish citizens only) Please sign !

Petition to demand XMRV testing in Spain (Spanish citizens only) Please sign ! If you're not a citizen of Spain.... please setup a petition to demand XMRV testing becomes available in YOUR country ! http://www.petitiononline.com/XMRV/petition.html Carla http://www.diagnosesupport.com Give Europe a Voice ! Continue

Added by Carla Witsier on November 17, 2009 at 4:16am — No Comments

Andrea Whittemore-Goad http://wpinstitute.org/patient/volunteer_form.html

http://wpinstitute.org/patient/volunteer_form.html Continue

Added by Andrea Whittemore-Goad on November 15, 2009 at 11:37pm — No Comments

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