John Leslie Whiting

@sunsopeningband @JanetDafoe When I first described it 1994, at the Dublin CFS conference, I called it DOPE (Delayed Onset Post Exertional Fatigue). I added Cumulative Fatigue and Momentum Loss Fatigue). I now think that ME should be thought of as the ME phenomenon and not the actual disease.

But the literature would disagree that I'm incorrect. When we say "hallmark," we mean "necessary." PEM is *necessary* for the diagnosis for ME/CFS. PEM is not a hallmark of any other disease process, meaning it is a neither necessary nor sufficient condition for the diagnosis.

@DanMissailidis @williamhu43 There is the issue of what looks like afterwards to have been microvascular strokes in the white matter (gliosis but without peri-lesional oedema). There might be a pathological stage that predates these lesions. Orthostatic ischaemia-like events might be worse if less glycogen.

@williamhu43 Yes we've discussed alternative interpretations here since it does not appear to be explicit proof of inflammation: s4me.info/threads/eviden…

One of the most interesting and rigorously conducted studies in recent memory has just come out: onlinelibrary.wiley.com/doi/full/10.10… Big one. I guess the big question is whether evidence of cerebral edema in people with ME/CFS is evidence of inflammation or is a feature of something else.

@_Lucibee Not helpful for non-UK medicos.

wrt The ME/CFS Delivery Plan... The third module on Managing Severe ME/CFS is now live. learninghub.nhs.uk/Resource/71269… Good news is that apparently it's actually quite good. Bad news is that it's only available to NHS staff and academics (ie, not allied services).

Bergen, 79 participants, found ME/CFS blood shows widespread protein shifts, with fewer intracellular proteins especially from muscle and bone marrow but more secreted immune, vascular, and metabolic signals, including reduced neutrophil proteins. cell.com/cell-reports-m…

An interesting read. hmmm I did not know. This is what I got from it, This study looked at many past clinical trials to see if weight-loss medicines work differently for different kinds of people. Researchers wanted to know whether age, race, starting weight, or blood sugar levels changed how well these drugs worked. The big takeaway was that these medicines helped people lose weight across almost all groups in very similar ways. One clear difference did stand out: women tended to lose a little more weight than men on average. Otherwise, the benefits were surprisingly consistent no matter who you were or where you started. This suggests these treatments are broadly effective and not just for a narrow group of patients. It also helps doctors feel more confident prescribing them to a wide range of people. Looking ahead, future research may focus on why women respond slightly better and how to personalize treatment even more.

@Kaddlesdd @HenryRunamucker @urquhartdaddy "For patients with experience of FND this evidence raises the question “What could have caused the described corruption of the brain-generated predictions & interference from the limbic system and amygdala?”." bmj.com/content/371/bm…

@HenryRunamucker @urquhartdaddy Yes, but it’s hard to argue for misdiagnosis if the goalposts are so far apart. If the basic premise is that FND = “something’s gone wrong in your brain with no structural cause” then there’s a lot that falls in that bucket.

FND's incoherent and overly broad criteria guarantees that thousands of people with different medical conditions will be misdiagnosed with it, and therefore given incorrect and harmful treatment as a result.

Persistent inflammatory cytokine signature in long Covid-19 patients: a meta-analysis link.springer.com/article/10.100… Screenshot from latest Science for ME weekly update #LongCovid #PASC

Older people with exceptional memory have a surprisingly high number of young neurons go.nature.com/4udnILJ

@EricTopol @NatureMedicine Also, GoogleAI Search used by a patient of mine connected symptoms and clinical phenomena that made these things to be plausibly connected when indeed, there was no way on earth that they were related to each other.

🆕 @NatureMedicine How does ChatGPT Health do for appropriately triaging a person as to whether to go to the emergency room or stay home? nature.com/articles/s4159… Not very well. Under-triaged 52% of case vignettes that are considered gold-standard emergencies, like diabetic ketoacidosis or impending respiratory failure

🧬 Phase 1 of whole-genome sequencing for ME and Long Covid is now funded for 2 years - building on DecodeME. It’s the world’s largest study of its kind for any disease, but it’s a £20m project and much more support is needed. I’ve just donated: actionforme.org.uk/research-campa…

@Janebfc This is horrifying. :( FND isn't even a condition, it's an abusive pseudodiagnosis.

@Janebfc I am more than shocked - I am EXTREMELY angry. These neurologists who re-diagnose ME and FM are d-heads.

How many #pwME are still here? I finally had a neurology appointment a couple of weeks ago after 13 odd years with #MEcfs to be told they don't diagnose it because there's no such thing. They recognise it as #FND together with fibromyalgia & other disorders. Short🧵 /1

1. Heartbroken to see our Horizon proposal for ME/CFS did not pass the cut-off. Every aspect was positively evaluated and got high appreciation. But some unfair negative comments killed the chances of success. Wonder who evaluates these proposals and if they understand ME at all

@ClagueNjc36 @Janebfc @NorthumbriaUni What are Functional Cognitive Symptoms?

@Janebfc This is why I have been teaching my students @ Liverpool uni and @NorthumbriaUni the difference between #LC, #ME and #FND using our publication - pmc.ncbi.nlm.nih.gov/articles/PMC11…

@FranceyME @Paula_JKnight I have two families with ME and hyper-reflexia.

@Paula_JKnight Neurologists are hopeless. I had such a wildly abnormal muscle reflex test that I nearly kicked the neurologist in the face. He said nothing. A rheumatologist did the same test & sent me for a full spinal MRI. Still don’t know if it’s my brain or old spinal injuries causing it.

This is very concerning. They know they can no longer treat #pwME with GET so dx something else where they can?! Now why would the powers that be want to disappear a whole disease? 🤔 🫰

@_Lucibee @TomKindlon And that’s why when presenting at local A&E departments long Covid and ME patients are greeted with eye rolls and diagnosed with mental health problems . It’s sheer ignorance amongst medical staff that have no interest in learning. As always the patient suffers

6/n That's 371 for module 1, 101 for module 2, and <50 for module 3 from an NHS workforce of ~188k doctors and ~423k nurses This is *pitiful*. 😞 @AshleyDalton_MP Your department needs to try an *awful* lot harder. #MEDeliveryPlan