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australian sixty minutes show interesting segment.

heapsreal

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I watched this last night and saw alot that was relevant to us. Apparently stroke victims have alot of inflammation caused by tnf alpha cytokine, sound familiar?? Anyway after this women got this injection her symptoms resolved and she remarked how she could see better because her brain fog had gone, she explained that brain fog is like trying to look out a dirty window. So this to me seems very similar to the brain fog we get. Treatment also showed improvement in brain perfusion.

Etanercept also know as enbrel was the tnf blocking drug used in treating these stroke patients. This is the same drug that the norway docs used with some success in patients who were non responders to rituximab. It looks to me that TNF alpha is a common cause of inflammation in brain disorders like strokes, dementia and alzheimers and probably ME/cfs.

I found this segment interesting for stroke people but also suprised at the relevants to many of us ME/cfs patients by what they were describing??

please watch as its interesting?

http://sixtyminutes.ninemsn.com.au/...nd-incredible-new-therapy-for-stroke-patients
 

Ruthie24

Senior Member
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Thanks for posting. That was really interesting to watch!

TNF alpha is also the culprit in ankylosing spondylitis which seems to be seen frequently in people in these forums as well.

That neuro from CA just makes me want to slap him. The arrogance that I've seen all too often in docs..."the evidence isn't there". Of course it's not if no one will get off their high horse and do follow up studies. Instead they sit in their ivory towers and sling arrows at people trying new ideas and are all too happy to let people suffer instead. Ugh!!!
 
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heapsreal

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Thanksamplifier ting. That was really interesting to watch!

TNF alpha is also the culprit in ankylosing spondylitis which seems to be seen frequently in people in these forums as well.

That neuro from CA just makes me want to slap him. The arrogance that I've seen all too often in docs..."the evidence isn't there". Of course it's not if no one will get off their high horse and do follow up studies. Instead they sit in their ivory towers and sling arrows at people trying new ideas and are all to happy to let people suffer instead. Ugh!!!
Yes the neuros arrogance. Amazing. Sort of like how ampligen doesn't work?? So it's not just ME they can be ignorant about. Sort of gets out of hand proving a treatments works. It really seems to come down to how much money the people testing the treatment have to spend on studies which is the limiting factor not if it works or even about improving patient care. Resistance to these new treatments are probably coming from docs protecting their own interests???
 

Ruthie24

Senior Member
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You'd think the makers of the drug would be willing to fund studies on this though because it would certainly increase their market by a HUGE amount if it was proven to be effective and the drug could be labeled for use in strokes as well. Strokes are common enough that there is a big market force there to be a motivation it would seem, unlike ME.
 

alex3619

Senior Member
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The stuff the neurologist was saying about placebo is nonsense. Further, he does NOT understand evidence based medicine. Sizable results are upgraded. A published case series can have its evidence rating upgraded based purely on the size of the outcome. These are extreme results. Its not the case that standard blinded placebo control trials are necessary, and indeed may be unethical. What is needed to know beforehand is which patients will not respond, which does mean research trials or in-depth investigation of those who do not respond versus those who do.

Further, I wonder if chronic brain inflammation is the final end-state of many diseases, including ME. If a single injection has such prolonged results, then this treatment, even if very expensive, is far more cost effective than other treatments, for better results. Only Rituximab is a rival for now, though I suspect there will be many such treatments being looked at in a few years.

Brain hypometabolism and hypoperfusion seem to be a common factor.

Many of the symptoms of the main patient in this trial I have experience with ME.
 

ukxmrv

Senior Member
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I can't remember any big change to my ME symptoms apart from the pain when I took Humira (anti-TNF drug). My high levels of TNF-a did go down after a couple of months of injections, every two weeks. At that time I didn't notice how my brainfog was affected by the drug. I wasn't expecting my ME symptoms to change so didn't keep a detailed diary.

I was taking Immunovir at the same time and that has already reduced my sore throat and glands.

The lack pain though was a big relief for me on the Humira.
 

alex3619

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These injections are into spinal fluid. The drug is not targeting the rest of the body, though I think some would leak. There is also the issue that if our inflammation has a different mechanism then it will not work. Or it might work only in a subset.
 

SDSue

Southeast
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Absolutely fascinating! While I'm not up to speed on all the science involved, it does give me a hopeful peek into the future. If this can be done for stroke patients, who knows what can eventually happen for us - especially if we can get the idiots like that neurologist out of the way.

Now it you'll excuse me, I'm going to daydream about walking into a center, getting a shot, and having my brain restored immediately :)
 

Scarecrow

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Thanks for posting. I'm grinning like an idiot at the teacher's astonishment and delight at her own recovery.

That's some sizable placebo response. "Pigs might fly" - what a twit of a neurologist.

Here's an abstract from 2012:
http://www.ncbi.nlm.nih.gov/pubmed/23100196

It's encouraging that even where stroke or injury was more than ten years before treatment, a strong response could still be seen.

p.s. wee bit off topic but Dr Tobinick and Dr Saver, the pigs might fly neurologist, were near neighbours professionally at UCLA Medical Plaza. Wonder what's behind that "snake oil salesman" comment.
 
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heapsreal

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These injections are into spinal fluid. The drug is not targeting the rest of the body, though I think some would leak. There is also the issue that if our inflammation has a different mechanism then it will not work. Or it might work only in a subset.

I think your right alex, if we have an infection than our inflammation will be ongoing and or need ongoing treatment of this inflammation. Possibly nail down which infections an ME person has and treat it eg valcyte for say cmv/hhv6 than use the enbrel to reduce the inflammation or maybe enbrel first to allow the infectious treatment to work properly???

SO i think its about whats caused the inflammation and is that cause still there too??
 

Sushi

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yes, used in other auto immune issues. I guess for ME though the issue is that it increases the possible chances of infections so an issue if one has a ongoing infection??

I'd guess that might be true. The Enbrel ads on TV really stress the infection issue.

Sushi
 

alex3619

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yes, used in other auto immune issues. I guess for ME though the issue is that it increases the possible chances of infections so an issue if one has a ongoing infection??

Given this is one time injection, it may also not have the same risks as ongoing treatment. Further, if it reverses much of the pathology then it might result in an improved immune system. There are too many questions, too many possibilities, and not enough reliable answers here.
 

heapsreal

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Given this is one time injection, it may also not have the same risks as ongoing treatment. Further, if it reverses much of the pathology then it might result in an improved immune system. There are too many questions, too many possibilities, and not enough reliable answers here.

im thinking ongoing treatment as thats whats been shown in smaller studies as well as others experiences here. But also i havent heard of an ME patient having spinal injections of enbrel, so maybe thats a big difference.