Discussion in 'BioMedical ME/CFS News' started by Scarecrow, Nov 21, 2017.
Spoiler: click to see animated gifs
@Joel gif overload, that hurt.
I don't understand the last one. Is it a quiz? Any prizes for the first to get it?
Ah, now I understand. I cheated and googled.
I could be remembering wrong, but I recall @Jonathan Edwards making a comment on PR a while back about how some with an autoimmune disease (i forget which specific disease he was refering to) seem to describe symptoms that sounded very much like PEM.
I may be remembering wrong though.
I vaguely remember this, too, although I do not remember the specifics.
What is "Relapsing Polychondritis" (RP) and how do the symptoms present? (I apologize, I do not have time to Google it right now but plan to later).
I have been so curious what ended up happening with your C3 (and C4?) deficiency? Is that definite and is Plaquenil the main treatment? I plan to re-read your posts later. Does Dr. Chheda feel you have ME/CFS, and these additional diagnoses, or is she not sure at this point? It is so challenging sometimes to sort it all out.
I am keeping you in my thoughts as you proceed and please keep me posted
@Barry - re the battery analogy - I said to my husband that my alternator is faulty! The battery won’t charge up and it won’t stay charged... it doesn’t matter how much I try to recharge, because the alternator is broken, the battery runs down really quickly! (Obviously he is a car nut!)
Sorry I haven't the brain power available just now to quote from the thread, but just to add my tuppence about PEM - you know how it is when you do a web search for one thing and happen across other interesting info? I was surprised to find info on rare diseases using the phrase 'exertion intolerance' and other descriptions that sound very like ME/CFS PEM - with the exception of the 'flu-like' flare which I feel is better defined by the ME ICC term PENE (post-exertional neuroimmune exhaustion).
I had always thought it's not specific enough to describe PEM as 'post-exertional pain or fatigue' - I realise that's how some people with ME/CFS experience their PEM as it depends on our own symptom profile, it's just that unless they've been thoroughly investigated for other possible causes such as rare genetic diseases, which may onset in adults, they can't be sure.
I think DNA testing will be really important to people diagnosed with, and researching ME/CFS, and while I don't trust the proposed UK MEGA project, I am hopeful on the ME/CFS Genes project run by Nancy Klimas' team: http://www.nova.edu/nim/research/mecfs-genes.html
Rough English translation (courtesy of Anna Mitchell in IiME Research Facebook group) of this article in Aftenposten:
I wish this bit had not been included. We do seem to be getting a slightly mixed message.
I think this is just because they haven't had a chance to fully analyse the results yet, or to discuss with Jo Cambridge, who's been working on B-cells since 2014 at UCL aiming to see if it's possible to be able to identify a subset of likely responders to rituximab, and I guess they're including the Cyclo-ME study as immunotherapy, and perhaps they're also thinking in terms of the wider groups they're cooperating with internationally.
I didn't really have words when I saw this news just reactions I can't actually play out in real life. The dinosaur riding a horse kicking a large football one at the end was just a bit of a "WTF, is this real life?" ending. Also it makes me chuckle. Spoilered below is a fuller video on youtube that it comes from for anyone interested.
Spoiler: click for video clip
Anyway, back on topic...on reflection, although this is not the news we hoped for it is still massively useful because we now know ME/CFS is unlikely to be an autoimmune disease and yet it is still likely there is immune dysfunction so it narrows things down.
I only heard about this today. It’s obviously disappointing, but I’ll tell you what — I’m incredibly proud of the response of people in the ME community, here and elsewhere. With this attitude, the disease doesn’t stand a chance. We’ll nail it.
Does that follow from the rituximab results, @Jonathan Edwards?
I agree. @Jonathan Edwards, this has the full quote of user @Joel's conclusion.
Should there be a new thread with people just posting conditions which are worse with exertion, or have a delayed fatigue? I’m thinking quite brief and to the point, with spin off threads if people are interested in discussing particular conditions.
Did I mention Periodic Paralysis in this thread? From what I’ve learnt about this I feel it must have some relevance to ME (or at least my experience ). It’s one of those things that’s broader than the name suggests.
The second part - that there is immune dysfunction - certainly isn't proven by the result but I think there is enough evidence of that outside this study.
I don't know why people are suggesting it's unlikely to be autoimmune.
Yes, it is a little bit tantalizing isn't it... Like when you think the main agonist in a horror movie has been killed off, then they rise from apparent death to stumble about.
I suppose what he is saying, is that, despite the new primary endpoint data being unable to demonstrate an effect beyond placebo (so far as we can tell at this time, based on heresay), he, personally, still believes there is a subgroup who do genuinely respond to Rituximab. Perhaps due to the size of the positive effect and it's temporal association with the mechanics of B-cell depletion. However, more importantly, at this time, in terms of harm reduction, Rituximab cannot be recommended for ME/CFS diagnosed patients in general. Until, and unless, a biomarker for the Ritux subgroup can be found. This suggests that their data mining, so far, has been unable to identify a biomarker in the response group. Or, is he hinting that they're saving that bit for publication?!
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