Very little happening!!

Is it me or is there very little happening in research news so far this year?? There are publications but nothing of significance. This time last year we were all excited about 'something in the blood' stressing cells as per Ron Davis....that level of excitement has not happened since, apart from Mark Davis's work. I wonder are they any closer to figuring out what that something is.....so slow.....I know we need patience etc....months seem to wither away and progress seems so slow.

 

Yes. It is hard to be patient when you feel your days are just wasting away...

 

This

 

And especially hard to be patient when we have no physical proof yet to counter all this bloody awful BPS, MUPS, CCS, whatever new psychosomatic label they're coming out with now! @Sunshine3

We need it as a shield as much as a route to effective treatment

 

It's a quiet period in terms of research news but research interest and funding has been increasing so it must be due to chance.

 

It is Mattie and even harder when you are wasting away yourself.

 

I'm just as frustrated. I could really do with some answers - even if as @Squeezy says it's just to give me some protection.

On the other hand I really don't need hype. I can't afford to have someone promising a biomarker by next Thursday if that isn't going to happen.

There are a lot of people working really hard on our behalf. It's just they are too busy in their labs and with their patients to keep giving us sound bites. I'd love reassurance, but want them to spend their time more effectively.

Then we have those who go to bat for us within the establishment, like our very own Jonathan Edwards and others like him. They may not be able to give us a running commentary for political reasons, but that doesn't mean they aren't achieving anything.

Then we have David Tuller who is travelling far and wide to change hearts and minds all over the place. He is making a huge difference.

So, slowly and steadily, we are making progress on the scientific, medical and social fronts. We have a long way to go, but in the last couple of years we have made great progress. Less than we would like, but more than we could have imagined even 5 hears ago.

We just have to keep pushing forward. Together.

 

I know, I Feel Like I'm always complaining, its just my health is declining so rapidly since February, I feel like I'm dying. Honestly, it's not an exaggeration. I keep praying, hoping but this disease is just taking over my body and I'm weakening every week. If it were only me and I had no children, I could cope but having kids makes it so hard to bear. I'm not diverting this thread now nor do I want sympathy as there is nothing anyone can do. I fear it may be too late for me when answers are found but I sure hope progress is made so lives can stop being lost to this disease.

 

Why wouldn't you complain @Sunshine3?

You are expressing feelings that most of us have had, and doubtless, will have again. There's nothing wrong in that. In fact it helps to have discussions like this.

There are probably many people who will read this thread who feel exactly as you do right now. They might not be well enough to join in,but hearing someone else express feelings similar to their own and discuss it might just make their loneliness and isolation that little bit easier to bear.

 

@Sunshine3 it is so awful to be stuck like this, feeling way past help, stigmatised and getting worse. @Invisible Woman is right - look how many people agree with her wise words! If we can't cry on each other's virtual shoulders, whose can we cry on?

I made the mistake of reading the threads that talked of how horribly, and wrongly, the psychiatric world categorise us. Big mistake. I don't have the energy for feeling so much impotent rage at the injustice.

But thank heavens there ARE terrific people fighting for us!

I'm full of admiration and enormous gratitude to the journalists and activists as much as the scientists and doctors who put their careers and reputations on the line for us.

EDIT: Corrected Administration to Admiration *bloody autocorrect!

 

@Sunshine3 - Just wanted to indulge in your frustration...as I feel the same way. Ian Lipkin said there is a publication coming out...we are waiting on at least two papers from the Norwegians. And OMF...I would love to see a paper (one is promised), from that team. Also, still waiting on something from the Lights.

I get solace from the fact that these researchers are well aware of the publicity fight and they want to get it right for science AND for us. We will have a major breakthrough and I'm looking forward to that day. The art of science is that it works by others poking holes in it. Our best outcome is having something very solid produced from each of these groups. I'm heartened by the fact that so many are now collaborating. My hunch is that the quality of papers that will be produced will only get better and better.

 

Almost as much as new research, I'm patiently waiting for the CDC to update their Information for Healthcare Providers.

It's been almost a year of "New content coming soon". It would be truly embarrassing for the CDC if new content isn't ready by June 1.

 

Yes I've felt that on this science for ME forum it's been conspicuous that there's been very little of actual science papers to discuss. On the positive there seems less BPS stuff too. I think in the past we may have spent so much time trying to counter the bad stuff it masked how little good was actually going on. I can well believe MS publishes twenty times more papers, or at least I hope they do.

 

This is my view too Diwi9. I want what will be published to be solid and if I have to wait a bit longer for it to be so, so be it, even though I want 'The Answer' to be published yesterday. It's hard being like this waiting though.

(Perhaps it will be like waiting for a bus, and three science papers will come along at once?)