Recent Activity
Activity stream for all registered members at Science for ME.
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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 -
Jonathan Edwards replied to the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
It may be difficult because, as Trish says, there is so much muddled thinking everywhere. But the first thing I would say is that 'the...
Jun 12, 2024 at 6:44 PM -
wingate 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 6:37 PM -
Robert 1973 liked Kitty's post in the thread Childhood, interrupted: 12-year-old Toby’s life with long Covid.
In addition to the ethical issues here, reports like this should always say very clearly that a proportion of pwLC (including children)...
Jun 12, 2024 at 6:33 PM -
Creekside replied to the thread A question about mitochondria.
They found an easy (for them) explanation, and of course don't want challenges to that. If they're crediting a source falsely, you...
Jun 12, 2024 at 6:29 PM -
Jonathan Edwards replied to the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
Yeah but nobody knows what. And if you seek hard enough you will find all sorts of made up stuff. At some point everyone involved has to...
Jun 12, 2024 at 6:28 PM -
Spartacus 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 6:28 PM -
Spartacus 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 6:28 PM -
NelliePledge 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 6:27 PM -
Spartacus liked Lou B Lou's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
The fault lies with the Drs who feel free to ridicule, denigrate, mock, to express and incite hatred towards certain groups of patients....
Jun 12, 2024 at 6:27 PM -
Yann04 replied to the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
Hmmm. I know most of this community is of the opinion that the diagnoses such as MCAS and EDSh are not legitimate. But I’m wondering...
Jun 12, 2024 at 6:27 PM -
Spartacus liked Trish's post in the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
If all the patient organisations, organisations like NIH, and the doctors whose advice they promote would stop suggesting EDS, MCAS,...
Jun 12, 2024 at 6:27 PM
