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Can't help feeling that this thread goes around in circles. We have already agreed have we not ? that EDS doesn't cause epidemics so was not responsible for ME (as defined by Ramsay).
Quite agree UKXRMV, Ithink i agree with what othrs have said that "CFS" tends to be a waste basket definition for a possiibly large number of diseases that have not been adequately diagnosed or even researched.
I have had some wonderful doctors I am lucky to be able to say but no-one has time to do the 5 hour intreview that it would take do do a thourh history - taking in all your past history huge range of current symptoms family hisitory and medactions tried and their effects or lack thereof, accurate blood pressure measurements etc.
FOr example as i posted elsewhere recently - some definitions of ME include PEM and some do not.
some people have good day and good hours some people feel their disease began at the same time or subsequent to an assumed viral illness- many, many others do not.
Some have gradual onset, some sudden. Some have nausea and vomiting , others never do; some can walk and even work full time. others are house bound or even bed bound....are we all talking about the same illness on this forum? I don't think anyone knows the asnwer to that yet and it iwll take a great deal of research to establish it.
There is no cure; no definite causative pathogen has been identified in all of us.
So if there is a chance that it is gentic in origin for some of us . I for one and keen to investigate that avenue, just as you are welcome to pursue XRMV as a putative causal agent.
In 2- 3 years time there will be gentic testing available that will perhaps differentiate some of us; I would like to be up high on the waiting list for that testing an any eppigentic treatments that may result.
Is Lyme disease the cause of ME? Many seem to be asking that and i am also having testing for Lyme.
Yes many people use the terms ME/ CFS /CF indiscrimitely unfortunately and i think that results form the above messy situation.
Many doctors have never heard of the term ME !!! About one in 5 of the doctors that come to my home know what i mean when i say ME or spell it out - most have no idea..... but all have heard of CFS.
If I am quoting someone else and they have used CFS i will include that term though ME is the name used in the 2011 Consensus document and the term i prefer.
The fact is there is sadly still no known or proven cause or sure for this illness or group of illnesses. Otherwise we would not be here.. Some are sure XRMV is the cause, some are sure EDS is NOT the cause ... we do not have sufficient evidence to make an informed decision either way is what I think.
I do not believe the evidence is there for XRMV - after many years of research into it - but i do not presume to ask anyone to alter remove or limit their posts - or indeed almost entire forums that are devoted to it - in discussing that issue.
So far this post has had over 22, 000 hits so
some people are interested in the question .....and I know of at least 30 people already who thought they had ME/cfs (the term used on the official Australian website) who have now had an EDS diagnosis- instead of /as well as, so I think it is a relevant and useful question to ask and to discuss......and heavens knows, we have the time!
best,
Ally
