In Ireland, mobile phone companies give 250-300 free webtexts per month. To the receiver, there is no difference. You send them through a website.I also think there will be a lot more people who would want to recieve such alerts via text message as logging onto a computer is not something they manage regularly, this and the fact I was unsure exactly how you would go about creating a 'network' and knowing the reach and scope of it were two stumbling blocks to my idea.
We definitely need to channel the already frequently online community better but to get anywhere near the loud voice we need for change I believe we also need to harness the less active sufferers and their friends and families. A text message saying there is an opportunity to take action by supporting a letter or signing a petition would be an excellent way to include the wider ME community.
Again I have no idea how to set something like this up, costs involved etc. But couldn't we have a system where those who signed up agreed to pay the 10p (of their equivalent) for the text message thus negating the need for funding of such a scheme? It would be on the understanding that they would only recieve a select number of messages and only when important opportunities were presented etc...
'ME/CFS' and 'CFS/ME' do not exist!!
There are many critically important differences b/n ME (G93.3) and CFS (R53.82).
Those who continue to try to 'blend' them demonstrate their illness ignorance.
Whenever anyone adds 'CFS' to ME, front or back (e.g.,
'CFS/ME', 'ME/CFS') or mix the two together in any way and
say or imply that they are the same thing - that immediately
makes it clear that they do NOT know what true ME, G93.3, is.
The 'experts' in what has now become a real mixed-bag
situation often prove not to be experts at all. Sometimes they
turn out to be 'self-proclaimed' experts. Sometimes they are
being well-paid to 'spin' the truth until it is unrecognizable.
Sometimes they have been involved for many years - yet have
never updated their thinking or resources or practices one iota
in all of that time.
So one must be extremely cautious and weigh carefully whatever
these 'experts' say...and verify, verify, verify every single syllable.
Here are just a few--of many--differences to consider for starters:
ME, G93.3, has been classified by the WHO under
Brain, Neuro and CNS (Central Nevous System) since 1969.
-->It is most similar to MS, and polio.
'CFS' was written (made-up) b/n 1988-1994, and remains
a tiny little 'syndrome' based on 'fatigue'. It has always been
classified by it's authors--the USA CDC staff--under rickettsial,
vector-borne and zoonotic, along with things like Lyme, and
Rocky Mt Spotted Fever, etc.
-->Think animal bites....
They each also START, PRESENT and END differently.
ME, G93.3, starts with a 'sudden onset viral event' that is well-defined
and which quickly morphs into a full-on multi-systemic and extremely
debilitating disease for which there is no known cure.
'CFS, R53.82, comes on slowly. It cannot even be diagnosed
until after 6 months, and then only when every other possibility
has been crossed off the list, as it is a 'diagnosis of exclusion'.
You can read what 'CFS' is--and more importantly, is NOT--
at the USA CDC CFS gov'n web site. It isn't much:
Please also know that is has been some vested interests, like the
Wessely School (WS) 'psychs' in the UK, along with some illness
ignorant patients using the power of the internet and not bothering
to verify FACTS or heed any SCIENCE, who have driven this
The WS influence started in the early 1990's when they wrote their
'psychosocial illness MODEL', which they wrote to help insurance
companies deny claims, and which they referred to as 'CFS/ME'.
The UK contingent also then somehow--the details remain difficult
to expose completely--managed to add 'post viral CFS' to their
version of the ICD10 (only).
??? Well, CFS has always been referred to by the USA CDC as
'post infectious'. No science exists, to-date, that proves it is ever
'viral' or 'post viral'.
ME, G93.3, has long been thought to be caused by an enterovirus.
-->Not a retrovirus, which is what the latest CFS suspect--XMRV--is.
The incubation period for ME, G93.3, is only approx 3-7 days,
which effectively eliminates many 'causes' considered for 'CFS',
including CMV, EBV, and XMRV, which have much longer
I could go on and on, but I think by now you must be catching
my drift. A great deal of sloppiness has taken over and grown
into an ever-expanding and mixed patient group who like to say
they have 'ME/CFS' and/or 'CFS/ME'.
Well, they do not. 'ME/CFS' and 'CFS/ME' only exist in their minds.
'ME/CFS' is not formally acknowledged or classified by the
WHO. It has no ICD Code.
Nor does the WS's 'CFS/ME'.
The term 'ME/CFS' became popular in N America when the
2003 ME/CFS Canadian Criteria was written. But as has been
pointed out above, this 'blending' should not be taking place!
It is the WHO's (World Health Organization) job to classify all
syndromes, illnesses, and diseases in the world, per their very
specific and detailed review process.
It is not the job of a mixed and ever-growing group of patients,
nor of any self-proclaimed 'experts' , none of whom prove to have
either the necessary skills or knowledge, to make up new illnesses.
-->This is what drives the confusion and perpetuates the myths.
--> Everyone needs to adhere to the science.
Those of us who actually are ME-defined (Ramsey, Hyde) are
deeply distressed by these behaviours; these illogical and
unscientific approaches. By this 'highjacking' of our extremely
debilitating Neurogenic disease - simply to try to make theirs
sound more serious. How unscrupulous!
What is most needed now is for each and every patient to be
correctly and properly diagnosed. And then each syndrome,
malady, illness, disease needs to be studied separately.
Growing numbers of this mixed crowd are proving over time to
actually have OTHER things wrong with them, ranging widely and
including things like thyroid, cardiac, Lyme, etc.This should be a
wake up call! Many of them could get their health and lives back!
Now in 2010, please keep these things well in mind. Progress
will only take place if rigidly controlled scientific research takes place.
In order for that to happen, the charlatans and paid vested interests
and those who have been in this game a long time all need to be
replaced by others who can think outside the box and who are serious
about focusing on the many DIFFERENCES - as they are what will help
to unravel the full etiology and pathophysiology of each illness, in time.
Continuing on in the same old way, with the same old players, all
locked into the same old mindset will only perpetuate the myths and
continue the old ways. They have yet to prove anything significant or
substantial, in more than 26 years.
-->But they have harmed the patients by roadblocking the answers.
All 'experts' must be crystal clear at all times and differentiate well b/n
CFS (R53.82) and ME (G93.3). Or they prove they are non-experts.
LK Woodruff, USA
P.S. The WPI's XMRV study was NOT done on any ME-defined
(Hyde, Ramsey) G93.3, patients.
*Permission to repost in it's entirety*
Date: Sun, 28 Feb 2010 21:47:28 +0100
From: Rob de ripper <robderipper@HOTMAIL.COM>
Subject: NOT, ACT: ME/CFS Emergency Action List
Do you want to know how to support biomedical research for CFS/ME/FM
FREE of charge and with little effort on your behalf?
Learn more at: http://action.phoenix-cfs.org/
LK Woodruff isn't a moderator. This was just an individual replying directly to Frank. This didn't go out to the 1000s of people on the Co-Cure. She has sent me quite a few messages in my time.what a condescending and useless reply. the co-cure website indeed mentions me/cfs. Is there another channel by which you could send it to co-cure? The only thing I can think of is that the person replying was speaking for themselves and not for the organization. Is there anyone here that is active in co-cure who knows what to do? I think that's a critical place to spread the word to and this can't be the final answer.