USA: News from Simmaron Research foundation

Viola

Viola

Senior Member (Voting Rights)
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/
 
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Just a reminder, a few more days to go. You can vote daily. I don't actually know how they are doing.
 
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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. :confused:
 
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



Simmaron Research
16 hrs ·
The Simmaron Research executive board has voted to expand the mission of our foundation to include a localized effort to mitigate the impact of the COVID-19 pandemic through application of our team’s scientific expertise.

More information regarding this critical pivot will be shared soon.

Support Simmaron: https://donatenow.networkforgood.org/SimmaronResearch
Click to expand...
 
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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.
 
Dolphin said:
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.
Click to expand...

If ME charities do want to look at Covid-19 research I think a good project would be a long term monitoring of people selected at random, tracking symptoms, recovery and how many had long term issues over a good number of years. As in how many who got Covid went on to develop ME like symptoms and if so were there particular symptoms or severity that they had initially.
 
Adrian said:
If ME charities do want to look at Covid-19 research I think a good project would be a long term monitoring of people selected at random, tracking symptoms, recovery and how many had long term issues over a good number of years. As in how many who got Covid went on to develop ME like symptoms and if so were there particular symptoms or severity that they had initially.
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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.
 
Dolphin said:
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).
Click to expand...
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.
 
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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".
 
Esther12 said:
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,.....
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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.
 
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chrisb said:
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.
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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.
 
Dolphin said:
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.
Click to expand...

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.
 
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