Recent Activity
Activity stream for all registered members at Science for ME.
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alktipping liked Jonathan Edwards's post in the thread Childhood, interrupted: 12-year-old Toby’s life with long Covid.
It looks to me as if someone has twigged to the potentially very serious issue of Dr Kane being seen to be treating children without...
Jun 12, 2024 at 11:08 PM -
Colleen Steckel replied to the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
While this is a very complex article covering the data, this quote sums it up nicely: "It is easy to see why the authors chose not to...
Jun 12, 2024 at 11:08 PM -
alktipping liked Robert 1973's post in the thread Childhood, interrupted: 12-year-old Toby’s life with long Covid.
Yes, it seems to have been amended for the better: Unfortunately, I don’t have a copy of the original article to compare so I’m...
Jun 12, 2024 at 11:08 PM -
alktipping liked Nightsong's post in the thread Childhood, interrupted: 12-year-old Toby’s life with long Covid.
The article does a really good job of presenting how an ordinary family's life can be overturned by all of this, how intransigent...
Jun 12, 2024 at 11:07 PM -
alktipping liked Eleanor's post in the thread Childhood, interrupted: 12-year-old Toby’s life with long Covid.
or maybe she's just getting better.
Jun 12, 2024 at 11:06 PM -
alktipping liked Robert 1973's post in the thread Childhood, interrupted: 12-year-old Toby’s life with long Covid.
There is also this quote: “Patients should be getting ongoing support and rehab, says Kane.” It’s good to read a sympathetic article...
Jun 12, 2024 at 11:06 PM -
alktipping liked Jonathan Edwards's post in the thread Childhood, interrupted: 12-year-old Toby’s life with long Covid.
I agree. My concern is that the reference to untested treatments will make it only too easy for health professionals to say to...
Jun 12, 2024 at 11:05 PM -
alktipping liked Trish's post in the thread Childhood, interrupted: 12-year-old Toby’s life with long Covid.
I agree there's cause for concern. Suggesting private treatment has something useful to offer for kids with Long Covid is wrong. Nobody...
Jun 12, 2024 at 11:05 PM -
alktipping liked Jonathan Edwards's post in the thread Childhood, interrupted: 12-year-old Toby’s life with long Covid.
I think there may be quite significant repercussions for Dr Kane over this. Giving untested anticoagulant therapy to children outside...
Jun 12, 2024 at 11:05 PM -
alktipping liked rvallee's post in the thread Reflections on the CODES trial for adults with dissociative seizures: what we found and considerations for future studies 2024 Stone, Carson, Chalder+.
They're writing a paper... about having done a study? Which is already published? Which they recognize was not statistically...
Jun 12, 2024 at 11:03 PM -
Colleen Steckel liked Binkie4's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
Part 2 of Jeanette Burmeister's article on the NIH intramural study is posted on her blog. It is long and requires concentration to read...
Jun 12, 2024 at 11:00 PM -
Colleen Steckel liked Dakota15's post in the thread Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al.
Sharing this message I received today from an individual with HHS, if helpful to know for anyone still working on this here: "Our...
Jun 12, 2024 at 10:59 PM -
alktipping liked rvallee's post in the thread Illness perceptions, experiences of stigma and engagement in (FND): exploring the role of multidisciplinary group education sessions 2024 Butler et al.
But, they don't have that. An "understandable illness model" is just nonsense, Scientology's "ghosts of dead aliens" is an...
Jun 12, 2024 at 10:59 PM -
Eddie replied to the thread Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS.
Probably not the right thread for it, but they did look at 197 unrelated hEDS patients a found a third has this kind of variant.
Jun 12, 2024 at 10:59 PM -
alktipping liked Sean's post in the thread Illness perceptions, experiences of stigma and engagement in (FND): exploring the role of multidisciplinary group education sessions 2024 Butler et al.
Free-text analysis revealed stress and trauma as the most common causal attributions, Was that before or after they had those casual...
Jun 12, 2024 at 10:58 PM
