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I think it's worth acknowledging the particular issues many of us face that can make decision-making more difficult, regardless of any intrinsic specific executive dysfunction. It can be hard to know how we will be functioning in the future, and so we may feel rather ambivalent about committing...

X thread continues: Thanks EMEC.

I'll resist the temptation to find an appropriate gif, but, :thumbup:

(Perth, Australia) Investigation of motoneurone firing behaviour and associations with symptom severity in ME/CFS. Interesting sounding research project looking for participants in Perth, Western Australia

Fereshteh Jahanbani1*, Justin C. Sing2, Rajan D. Maynard1, Shaghayegh Jahanbani3, Janet Dafoe4, Whitney Dafoe4, Nathan Jones1, Kelvin J. Wallace1, Azuravesta Rastan1, Hannes Rost2, Holden Maecker5, Michael P. Snyder6, Ronald W. Davis4 Presumably Whitney Dafoe is the patient. A few red flags...

While trying to understand poetinsf's post, I briefly contemplated @Andy in fluffy pyjamas...

Cognitive tests Spinal fluid Neuroimaging some overlap but interesting underwhelming result, given these three regions were the most different out of 39 regions.

Fukuda criteria

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5393352/ Abstract The purpose of this study was to investigate whether CFS patients without comorbid psychiatric diagnoses differ from CFS patients with comorbid psychiatric diagnoses and healthy control subjects in neuropsychological performance...

There's a brief mention in this post. NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019 The study pre-dates the establishment of this forum. For studies from 2017 or before that aren't here, threads on the...

Just to be clear, again, the words in that post aren't my words. They are Jeannette Burmeister's. I imagine that some people find maligning and gaslighting patients both fulfilling and rewarding; the likes of Walitt don't make me wonder much about that.

Is this the update you mean @Dolphin?

That study was hopelessly flawed in its cohort matching. The HV had a big percentage of people over 50; the ME/CFS cohort had a big percentage of people between 18 and 30. And even with that age skew, there was no difference in Beighton scores. The following diagram is from a nice 2017...

There's some other good content on her website too. People might like to check out the 'Watertight Diet' under the "More" tab on the right of the home page.

Yes, I liked it too, plenty to think about. And, on the other side, there's commentary about how patients often contribute to creating celebrity scientists or celebrity clinicians. And how that often doesn't end well.

I'm not saying I believe all or even any of the postulated hypotheses. But, there may be possible issues with collagen or associated tissues that are different to the 'gross collagen abnormalities' that you are thinking of. There could be something only slightly related to collagen's...

The preceding posts have been moved or copied from the Paul Garner thread

Five pages of posts have been split into a new thread: 'Curable' mind-brain training app and ME/CFS, including the role of Fiona Symington

Just as an aside - I wonder if we have a thread the KCL Covid Symptom Study Biobank? They are in the business of selling participants' anonymised data: I have substantial concerns about how effectively participant data would be anonymised. The Biobank wants to link samples and data from the...

As I'm sure you know, there are some hypotheses that have been put forward: Some of the proteins found to have altered levels in ME/CFS have some relationship with collagen - but we don't have good replication of the findings, and then there is the issue as to whether the protein actually does...