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35 plus Researchers wrote a letter in September 2013 that they have consensus about using the CCC as case definition for research and clinician purpose. Why did they not propose the ICC, which where already there. They even mention them in their letter. Does anyone know why the did not go...

Hey guys, Can anyone of you give me some short information about the following questions. The IOM report was requested by the HHS, right? Why did the HHS requested the report in the first place? Pressure of patient organization like ME Action? What was the order/question of HHS to the IOM...

Me too - muscle soreness usually starts the next day and as I can remember from my healthy days was often worse the second day but it never came along with sweating, flue like symptoms, feeling fluish, brain fogged, raised heart beat, increased Orthostatic intolerance. And in healthy days the...

Thank you Medfeb. Interesting, that at the end 50 signed. That's not mentioned in the IOM Report.

Hi guys, Before the IOM took on its work with the report, 35 scientists wrote a letter proposing to use the CCC. This is also mentioned in the IOM report but I cannot find the source/the letter with the signatures. I would like to know which scientists signed the letter. Can anyone help me with...

https://m.facebook.com/mmissinggermany/

Is anyone interested in an upcoming „German MillionsMissing Action“ update to know how and where to help and support? If there is a millionsmissing action in Germany we will announce it here anyway. So you will know the place where it will take place and get the opportunity to help in the...

I can understand your resistant against facebook especially because of privacy concerns.

We will keep up the discussion here too. I can inform you. Why don‘t you want to join on fb?

Hey guys just wanted to let you know that we now have a facebook group Called #MEActionDeutschland. There we can plan our actions like millions missing. Please join this group if you want to help organize actions like millions missing in Germany. @Joh I am in contact with the person who wants...

Hey guys just wanted to let you know that there is a new fb group called millions missing campaign and is solely dedicated to the campaign this year. A lot lg good Information. One thing Ben HsuBorger Said that shoes are not an obligation. A mm Action can also be done without shoes. Shoes are a...

Guys quick update. The LVS gave me just an informal answer that they are still in the thinking process with the DG if they do a mm action or not. They really would like to butt resources are scarce. I told them that we are highly motivated to support them and may be they should give a call for...

I would suggest that we wait for their answers. I know one person from fb who would be interested in Düsseldorf or cologne. Problem are the shoes. If we have one action in Berlin where the shoes are used we do not have shoes for another action... But we will see. Hope the DG and LVS are...

I also wrote to the DG and ask if they are planning something. May be we just wait a couple of days until that person has talked to the DG. May be there will also be an announcement from the DG itself that they are supporting the action in Berlin. If we have any further information we can come...

Hey Joh, I think there are some misunderstanding and I would be happy to cleart it up. Especially in a foreign language - english ist not my mother tongue - things can be quickly understood the wrong way. I did not say that Tübingen is decided yet but if the majority of fb would be for Tübingen...

Mathias Ilka will be in Berlin at the „Platz des 18.März“ at the Brandenburg Gate. But it is not a Millions missing Protest but the protest of „50.000 and one voice for me/cfs“. He for himself will not use the shoes. He is using his logo. So if there is no other group yet in Berlin the shoes...

I like her idea. As far as understood her she things about an international fb group for all who are planning Millions missing action in their cities. I don’t know if it would be confusing for people from different countries, and not everyone is able to write in English but on the other hand you...

These are suggestions. We should look where we do have the highest number of persons who could support the action in the Field and if the place is promising. For the ones who do their job at home - like me for instance - it does not matter where the action takes place in Germany. We Will find a...