I know there are a few studies ongoing at the moment including the ones in Germany which have been going for a couple of months. It would be great to have some updates or at least some sort of timeline/estimate on when we can expect some actual results. It seems as though it has been very quiet since the studies began.
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Interested in this too!
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Pretty sure they said that since once studies are ongoing the rate of new developments and updates is slower, they will make an update post every quarter. So I guess We’ll get one either this month or next month.
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Hi @MS11, here is the latest update: Sample collection complete for genetics study: What's next?
There isn’t much else to share at the moment otherwise. The studies are proceeding through phase as planned.
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Hopefully we get a quarterly update. Even if it’s just to re assure the community. I think I read somewhere this would happen.
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Just wait till they need more money…then they’ll make an update.
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Considering the uncharted infancy of this research I’d be interested to hear absolutely anything.
“A sample was looked at under a microscope and it was determined we need a new microscope.”
“Somebody poked their head in the lab having mistaken it for a bathroom.”
Literally anything.
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Well I wasn’t even expecting that much…just a check in as usual per monthly report…this place has been ghosted for a long time and the ones left here, are largely in a perilous state verging on suicide and have been suffering for years…
I’m disabled and lost my job but gave a lot over the years to both organizations…also participated in the genetic study at Tampre.
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It’s quite easy to see why people feel this way. It appears that there are too many egos and personal agendas. We’ve seen it being played out repeatedly these last few years. Why people can’t work together is beyond comprehension. Playground behaviour while people are losing their lives. The wellbeing of the community should be at the heart of everything, that being the case then we wouldn’t go wrong
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Laz have you seen any improvement in your condition. Have you ever had any periods that have got better? Is life OK for you now?
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I’m not particularly sure what you’re referencing, or what relevance it may have to this thread.
There will be a quarterly update soon, as has always been planned. Please see my post above.
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I’m sorry to hear this. I wish we could change everyone’s personal situation and quickly, but unfortunately those aren’t the avenues we are afforded.
This seems a bit unfair.
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I’m not particularly sure what you’re referencing, or what relevance it may have to this thread.
There will be a quarterly update soon, as has always been planned. Please see my post above.
Thank yiu for the response.
Please accept my apologies I wear my heart on my sleeve at times. Its part of the symptom list that has me at its mercy as I’m sure is the same for others
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I’ve never seen mitch leave the forum or not post anything for months since he took over…it’s just strange is all I’m saying when u r dealing with a situation that people are ending their lives over…
And given the fact that others before have just vanished as well never to return fir some reason…
If you want people to keep donating I would atleast say something every 3 months??
Have u noticed this place has dried up except for newbies and old desperate victims like me and laz??
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I am quite irritated by the tone that some people use here, a tone that is quite hostile, aggressive, dismissive and entitled. While I understand the difficult situation that many of us are in, this is not an acceptable way to communicate with or about people who have made an enormous effort to advance our cause. It’s fair to ask questions, but people will have to accept that some questions will be answered at a different point of time or even not at all.
The studies are progressing well. Mitch and Axolotl are still around and communicating with the scientists. It was always made clear that once things are in the lab, updates will only come at longer intervals, because that stuff takes time, unfortunately. Please also consider, when you make demands, that the PFS Network members, like all of you, suffer severely from PFS and/or have other commitments, too. It took a huge effort to get these studies going. Now it’s time for the scientists to do their work and there is less that we can do, which naturally means there is less to talk about here.
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This should also be a place of support, empathy understanding, given the nature of the disease. Peoples emotional states have been severely effected so giving this some consideration would be much better rather than simply lambasting the poster/s.
Your reply would have been recieved much better without the attacking mantra… two wrongs and all that…
Generally people will apologise if they’ve made a mistake. So a clarifying response would have probably been more than sufficient
Also being in the privileged position of having knowledge of what’s going on is somewhat different to those siitting on the outside desperate for an update…
I’m sure everyone is appreciative of the sacrifices being made and the selfless work being carried out. We all need to see it from each others perspective .
To add Good and regular communication is a big part in any organisation. Its even more important in an environment such as this.
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