Recent Activity
Activity stream for all registered members at Science for ME.
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Lindberg liked mango's post in the thread Sweden: ME clinic and Masano Health digital rehab for ME/CFS.
Great letter/opinion piece published in a local online newspaper today, written by @MittEremltage :thumbup: Insändare: Rädda regionens...
Jun 12, 2024 at 6:58 PM -
Peter Trewhitt liked Mij's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
Admitting they don't understand M.E or that they haven't figured it out yet is not the same as dismissing the patient. I can respect that.
Jun 12, 2024 at 6:57 PM -
Peter Trewhitt liked Solstice's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
The guy that first diagnosed me told me there was nothing he could to help me. Which is devastating but also absolutely fair imo. I...
Jun 12, 2024 at 6:57 PM -
Peter Trewhitt liked Lou B Lou's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
'The only problem with that is that it is not fair to ask people to ask for help when nobody knows what would help. They just end up...
Jun 12, 2024 at 6:57 PM -
Peter Trewhitt liked Jonathan Edwards's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
EDS is a group of monogenic genetic diseases, most of which we know the gene for and are easily tested for. There are 13 main types....
Jun 12, 2024 at 6:56 PM -
Peter Trewhitt liked Jonathan Edwards's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
I think that is fair. So I guess that my conclusion that there is an urgent need for some sort of consensus amongst the medical...
Jun 12, 2024 at 6:56 PM -
Peter Trewhitt liked Yann04's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
Out of curiosity what’s the issue with EDS. Isn’t it a group of genetically testable diseases — which would make the diagnosis...
Jun 12, 2024 at 6:55 PM -
Peter Trewhitt liked Mij's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
A couple of days ago on X there was a patient dx with M.E who posted information about CCI/AAI, MCAS, EDS that received many replies...
Jun 12, 2024 at 6:55 PM -
Peter Trewhitt liked Solstice's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
Also, if they don't want us shopping for help, then get us the help we need through the proper channels.
Jun 12, 2024 at 6:55 PM -
MittEremltage liked mango's post in the thread Sweden: ME clinic and Masano Health digital rehab for ME/CFS.
Great letter/opinion piece published in a local online newspaper today, written by @MittEremltage :thumbup: Insändare: Rädda regionens...
Jun 12, 2024 at 6:53 PM -
LJord liked Lou B Lou's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
'The only problem with that is that it is not fair to ask people to ask for help when nobody knows what would help. They just end up...
Jun 12, 2024 at 6:53 PM -
LJord liked mango's post in the thread Sweden: ME clinic and Masano Health digital rehab for ME/CFS.
Great letter/opinion piece published in a local online newspaper today, written by @MittEremltage :thumbup: Insändare: Rädda regionens...
Jun 12, 2024 at 6:52 PM -
Hutan liked Jonathan Edwards's post in the thread United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media.
I absolutely agree with the first half of what is said. But it will be completely ignored because of the second half. We need to stick...
Jun 12, 2024 at 6:46 PM -
rvallee replied to the thread National Academies: New Report Reviews Evidence on Long COVID Diagnosis, Risk, Symptoms, and Functional Impact for Patients 2024.
I'm seeing a few mentions of how there's now an "official definition" of LC, but aside from a few details, this is basically the same...
Jun 12, 2024 at 6:45 PM -
Hutan liked butter.'s post in the thread [Thought experiment] In a random cohort of 100 ME/CFS patients (recent diagnosis via CCC), what can you know about them with 90%+ certainty?.
Very interesting study, I thought I would mention that measures to increase volume (saline, desmo,fludro,..) worked well for me in the...
Jun 12, 2024 at 6:45 PM
