questions

[Galewind]

I am not here, so I am not really sure where to post this... I have a few questions about CFS/ME and the articles confuse me.

1. Is there a cure,or no?

2. XMRV - is that CFS, the virus that causes it, or is the info I am reading fake?

3. I am constantly seeing ME as being compared to the aids virus and this is really scaring me. Is this the new aids, or just like it? Has anyone contacted their ex's to let them know they might be infected with it as well?

I am sorry if this has all been asked before, but reading every single thread is hard for me, and I don't understand a lot of it and none of my Dr's help..

 

[Snowdrop]

Hi @Galewind

I'm from Toronto also. I am house/bed bound and very limited in my energy but there is @ScottTriGuy from Toronto also and he is very active as a local and National advocate for ME with http://www.millionsmissingcanada.ca/

I'll try to answer your question.

There is no diagnostic test as of today for ME. There is no cure as yet either. You have come here at a time when things may be changing with regard to how ME is viewed. This is a result of a lot of hard work by a lot of dedicated people. There is much to know and discuss I'll give you a few links for some info.

There are a few different diagnostic guides for ME.
http://me-pedia.org/wiki/Canadian_Consensus_Criteria
http://me-pedia.org/wiki/International_Consensus_Criteria

There is a new feature length film about our disease: https://www.unrest.film/ you can watch this on Netflix

There is starting to be some good biomedical research happening. See another post where I link to the research: http://forums.phoenixrising.me/index.php?threads/researching-research-in-usa.58608/#post-968279

While this illness has been poorly understood and no biomedical evidence forthcoming in decades past the psychiatric community swooped in to 'claim' sovereignty over the illness as psychological in origin (with a large moral component of lazy slackers don't want to get well)

They even spent (in the UK) a great deal of money to prove that exercise and a good talking to (change your perception of being sick to one of being well)
would be excellent treatments for us all.

This narrative is being dismantled here: http://www.virology.ws/mecfs/

That's an awful lot of info so take your time.

 

[Rebeccare]

Welcome! It's good to have you here! I'm not from Toronto, but I was just there visiting my extended family.

1. Is there a cure,or no?

Right now there is no cure, although there is new research currently being done towards this goal. And there are some drugs, vitamins, and lifestyle changes that do seem to help some people manage their symptoms.

2. XMRV - is that CFS, the virus that causes it, or is the info I am reading fake?

At a certain point it was thought that XMRV caused ME/CFS, but subsequent research showed that a link between the two was very unlikely. It appears that there may have been problems with the original study that showed higher rates of XMRV in people with ME/CFS than in the general population--the samples from that study may have been contaminated.

3. I am constantly seeing ME as being compared to the aids virus and this is really scaring me. Is this the new aids, or just like it? Has anyone contacted their ex's to let them know they might be infected with it as well?

Don't be scared! ME/CFS isn't AIDS. The two diseases have different causes and different prognoses. ME/CFS a chronic condition instead of an acute or fatal one (except in very rare and unusual cases). And it isn't transmitted between people through sexual contact or any other type of contact.

The comparisons between AIDS and ME/CFS you have seen may be referring to the impact of the disease on quality of life. Since many people don't know about ME/CFS and how debilitating it can be, it sometimes helps to compare it to a disease that people are more familiar with. At this point people with well-managed AIDS are considered to have a better quality of life than many ME/CFS patients, who struggle with day-to-day tasks. I've also seen this comparison made between cancer patients and ME/CFS patients. But AIDS, cancer, and ME/CFS are all very different conditions. So don't worry.