USA: News from Simmaron Research foundation

Vote to get money for Simmaron Research foundation (free and easy)

Hi everyone, this came up on my Facebook. I don't know how long it is going to go on for. It involves daily voting, but any votes would be good.

It is very easy. You just click on the link below, then after a few seconds a box comes up with info and click on vote Then a box comes up and you click on "I am not a robot" and input your email address. That is it.

I hope this link works. http://mygivingstory.givingtuesday.org/fbcontests/profiletab/MyGivingStory/2730817

Edited to add: This is a link to the Simmaron Research Foundation website scientific advisory panel http://simmaronresearch.com/scientific-advisors/

 

That was easy!

 

Bumping this up in case anyone missed it during the holidays. Voting is exceptionally quick and easy, even for a technologically challenged person such as myself!

 

Just a reminder, a few more days to go. You can vote daily. I don't actually know how they are doing.

 

I haven't been able to vote since yesterday. I get a message to update to a supported browser, yet Firefox, which I use, is listed among the supported browsers.

 

I think it is over now

 

I am still seeing the Vote page, but am still getting the weird 'update to a supported browser' message.

 

https://www.youtube.com/watch?v=3YmMNpbFjp0

 

Merged thread

Simmaron Research fundraising for clinical research including Ampligen

 

Merged thread

Simmaron Research board has voted to expand the foundation’s mission to include a localized effort to mitigate the impact of the #COVID19 pandemic

 

To be honest, I'm disappointed by this. There is a shortage of funds in the ME/CFS world.
I hope other ME/CFS research charities don't follow suit (I don't imagine many will).

It could be the case, of course, that they won't use existing funds, but that seems unlikely.

 

Yes, that could be useful. Though it is worth pointing out that ME/CFS-specific research may also go on to be useful for those who suffer long-term effects of COVID-19.

 

In my country, a charity can’t do things outside its aims. It’s probably the same in many countries. So it probably depends how vague or specific such aims are. So probably not a big worry for most charities with ME or ME/CFS in their titles.

 

There's going to be a lot of attention and money on COVID-19, and people like Wessely, Gerada, Crawley can be expected to try to use their 'expertise' as a way of getting a piece of that pie, shaping how people with post-Covid19 symptoms are viewed and treated, which I expect will in turn lead to further problems for patients with ME/CFS. Some decent ME/CFS charities getting involved early, and perhaps getting positions of influence, could be much better for us than having them sit it out and focus just on ME/CFS.

It does depend on the details of what is being done. This could mean all sorts: "a localized effort to mitigate the impact of the COVID-19 pandemic".

 

It might be reasonable to expect that they will not emphasise the psychoneurotic elements of any long term sequelae until the health of the Prime Minister is assured.

 

Perhaps I needed to be more specific. I don't have any major problems with money from ME/CFS charities being used for post-Covid studies. However my interpretation of this is that is not necessarily what is being referred to, but just general COVID research.

 

Honestly this should not be underestimated.

Where medicine is driven by dogma and propped up by politics, sometimes it can be forced to take weird concessions because the politics have changed too much.

 

I don’t know if this has been discussed but Simmaron are still doing , imo, good stuff like this treatment trial

http://simmaronresearch.com/2019/04/help-simmaron-amplify-therapies-for-m-e/

I had thought that ampligen as possibility had died a death after it didn’t pass the last attempt to pass it.

 

We have seen this over and over down the years. Everyone else is more important than us so the money to help us is used for someone more deserving - the exact explanation given when the CDC used the money they were given for ME for other projects.

Grants have been used to look at liver disease, almost anything except us.

That could be why there has been no help for us for over thirty years. I am past making excuses for them.