Turn ME into WE - Join the New Emergency Action List

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Nice.

I've been away a while, still catching up on everything here.
When I was last about there were a few advocacy ideas, and I was trying to get 'US' to work.

....and all the time what I really needed was WE.
 
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Great idea, I'd thought we needed something like this myself and was thinking of how we could best connect all the members of the larger ME community. We are scattered across different forums and support groups (as well as the world) but I think there is also a lot of overlap and potential for intercommunication and joint action.

We need to make advocacy as ME friendly as possible. The idea that came to my mind was to creat a 'network' For example I emailed a link to my friend with ME in Norfolk and she has multiple friends who live locally who also have friends &family etc. In my example she was very grateful for the quick link I sent her &was able to contribute where otherwise she would not have done. Also, of course this also led to multiple other people receiving the email and taking action.

This made me think such alerts which could be easily forwarded would be a fantastic idea -I'm so pleased you have made this a reality!!

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...

Jan xx
 

Nina

Senior Member
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Great idea, Frank. I have subscribed and will use this to forward important info to the national groups I belong to (Germany). Thanks!!
 

Frank

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@ Jan: Good feedback. But i don't quite understand your last paragraph. Do you mean that ppl should donate to become a member ? This project has no intention of collecting money out of the pockets of the patients.

Nina: There's a possibility of making subgroups for people who speak different languages. In the future this could be worked out and as time passes by i'm sure we'll make it more Global.

There's much work to be done, but in the meanwhile we'll start collecting adressess, so tell a friend ;)
 

Jenny

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Good idea Frank.

Just a small thing - would it be possible to correct the typo in line 5 - opportunity's x opportunities?

Sorry to be pedantic, but it's important to make sure nothing marrs our professionalism!

Jenny
 

Dolphin

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Well done on making this happen, Frank.

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...

Jan xx
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.

Lots of people never use them so I use theirs for ME purposes.
It can only be used for texts within the country.

Some other places give smaller amount of texts e.g. 10 free texts a day (which is 300 a month but not so good if you want to do bulk tests all at once). Maybe such facilities are in other countries?
 
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"A small group of thoughtful people could change the world. Indeed, it's the only thing that ever has." Margaret Mead

I read this quote some time ago and there is sooo much truth to it!

I am joining

Anna Louise
 

Frank

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Congratulations all ! The ME/CFS emergency action list (new name) reached 100 members after two weeks. And this without making this mailing list public besided on this forum. This however is going to change and we will go for a 4 digit number! So 1000 members by the end of 2010 is the goal.

Also thankyou all for your feedback, i made the nescessary adjustments.
 

Frank

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/////////////////////////

For public release:

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/


////////////////////


If possible the words FREE and little effort in bold and a link with the image.
 

Anika

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I had it on my list to sign up, and finally made it!

My only thought, is that we sometimes need "critical" not just "emergency" emails. Probably more critical than emergency, in my experience. So, I hope the action list won't be limited to emergency or life support actions.
 

Frank

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I wanted to spread the word about the action list trough co-cure, here's the response i got from a moderator:
'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:

www.cdc.gov/cfs/

~

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
growing confusion.

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
incubation periods.

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.

Sincerely,

LK Woodruff, USA
lkw777@charter.net

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/
 

Dolphin

Senior Member
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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.
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.

I think Co-Cure is a very good list. Messages are pre-moderated. It is a low volume list so it is possible to keep up to date with what is happening. Messages are often forwarded to other places.

LKW has no power as such to stop you posting again to Co-Cure - people can keep posting.
 
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Cau

I think this emergency action group could be really usefull. If there is an action, you write just an email to all members and they can react fast - its so easy. I just checked how many members has this group - the number is 172 personnes and the aim for 2011 is 1000 members. I ask myself if its a lot. I think there is around 17 mil. of CFS patients and we are able to collect only 172 personnes for some months!!! I think its nothing. How do we want to react to something important?! We miss a lot of possibilities because of our passivity. Yeasterday, there was an action on iGive for 5000 dollars. I dont want to say now - lets go to make a big group and to "steal" all money possible for each action because I think also other organisations needs money for their activities as well but for examples yeasterday 5000 dollars wasnt spent - so just a pitty. I also checked the petition for funding NeuroEndocrineImmune (NEI) Center in U.S. Till now, there are 495 signatures. Their aim was 100 000 signatures but I think that they changed it to 10 000. Everything goes so slowly. Maybe someone will say that I am too impatient but I think we have to do more for publicity of this group to get the most members possible. Then we dont have to make a big publicity for each new action, petition,.. - we just write about the action to all members and they can decide if they support it or not.
Now I am also speaking with the people from European Society for ME (ESME) - www.esme-eu.com
There are a lot of renowned CFS researchers like de Meirler,...
They would like to increase the CFS research and to do more informations about CFS. Now, they are trying to get money for XMRV research in Europe. So I just asked them if we would try to do a petition to help them to get some money from some grants. I am a bit working in this area and in Europe are a lot of grants. ESME liked my idea and they would like to organise it somehow. Maybe I will need a bit your help - I will let you know when I will get more informations from ESME about their imagination.
So if the emergency action group will have a lot of members - also the future actions like petitions would be much easier - or do we want to lose more time? - its not the same if we need for getting 10 000 signatures one month or half a year. We already lost a lot of time. So lets go to make some publicity to emergency action group on facebook or I think there is in fast each country a CFS group with a webside - so because of language a personne from each country could contact the CFS group and to make a publicity for the emergency action group. Or some other ideas? Ok, I am going to make it now in my country.
 

Frank

Senior Member
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Michal,

I respect your points of view. The list was made to separate the more active ME/CFS patients from the passive. I think we'll grow, but slow. We'll do more campaigning in the comming months. Know that some patients, don't have internet, don't have the ability to use internet or just have no earthly idea we exist. Maybe we'll expand the list to the all neuro-endocrine disorders, if sience goes in that direction, we'll see. We got to get the word out; altough people don't have a lot, they still can help in some way.

This iniative is still at a rather amateur level, but we'll keep working on it. If you have any suggestions so that the list can be more appealing to a lot of people, feel free to share them.