My thoughts on why I think ME/CFS is not, at its root, a putative neuroinflammatory disease

[docdan401]

Ibudilast in healthy volunteers: safety, tolerability and pharmacokinetics with single and multiple doses
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2675769/

Yeah what do u take from that leokitten? I've read some of it

 

[Research 1st]

Hence the term "myalgic encephalomyelitis" is clinically inaccurate and inadequate

Hello. Well that's one view point certainly, and it would be easy to say that ME doesn't involve neuroinflammation in a classical sense I agree (gross inflammation along the lines of bacterial infiltration), until you hear of the very latest research, American of course, that is suggestive of a subtle version of an ME -itis, and one that may be transient.

Naturally, doctors aren't aware of this up to date knowledge, and if they were, can't believe it, so dismiss the idea of ME actually being present in anyone diagnosed with ME or CFS, by sticking to the classical description of an inflamed brain. (In the UK, an ME post mortem study(s) did show inflamed spinal cord tissue - ganglionitis and corpora amylacea (waste product of dead neurons if I remember correctly), which is somewhat alarming but perhaps inevitable in a disease that affects your brain so adversely and so young, and gives teens the short term memory of a 70yr old.

Cort Johnson did a write up on Dr Anthony Komaroff's thoughts on 'ME itis' online called:

Neuroinflammation: Putting the ‘itis’ back into Myalgic Encephalomyelitis – Back to the Future For Chronic Fatigue Syndrome?

And here are some quotes from Dr Anthony Komaroff, saying an ME- 'itis' in CFS, is indeed possible.

“Our results provide evidence of neuroinflammation in CFS/ME patients, as well as evidence of the possible contribution of neuroinflammation to the pathophysiology of CFS/ME.“

''“There is, and you’ve heard it repeatedly in the last three days, a theory that CFS might reflect an ongoing activation of immune cells in the brain, not in the periphery, but in the brain”.

“Yes. If it were confirmed by multiple other investigators it would, for me, say that there is a low-grade, chronic encephalitis in these patients, that the image we clinicians have of encephalitis as an acute and often dramatic clinical presentation that can even be fatal has – may have – blinded us to the possibility that there may be an entity of long-lasting – many years long – cyclic, chronic, neuro-inflammation and that that underlies the symptoms of this illness”, commenting that it was “entirely plausible and these data are consistent with it”.

Source:
http://www.cortjohnson.org/blog/201...yelitis-back-future-chronic-fatigue-syndrome/


Also another American researcher, Jarred Younger is proposing measuring brain temperature in CFS patients. . This might be a novel way to detect low level neuro inflammation in CFS, where a conventional MRI fails to:

You can see the video of this in a discussion, here, at 9.00 elapsed:

Thanks.

 

[leokitten]

Yeah what do u take from that leokitten? I've read some of it

Typical adult dosage of ibudilast is 10mg twice a day. But as you see in this study you can safely go to higher doses.

 

[Mary]

A good point, I've been thinking about this possibility for a long time, but here in the U.S. you know we don't have much of a choice.

They will never give me disability because I can work full-time still even though it's at a huge cost, they don't care about what is doing to my health or life outside of work. I basically have to get to the point where you and many others did where you work yourselves to the ground and the CFS gets so bad that you then require disability.

What sucks is that they won't give me "preemptive" disability for a period of like one year to improve. That's what's so terrible about ME/CFS, it breaks all the rules and what we need to get out of this disease just goes against anything insursance or disability would allow.

When I first applied for SSDI based on CFS (this was back in 2000), I was denied. On appeal, I think, my doctor added a diagnosis of PTSD. There was some basis for a PTSD diagnosis, although the actual reason I couldn't work was PEM, etc. I think my disability was granted on the basis of PTSD - I never saw the reason I won the appeal (just was glad to have won!)

I know you're more likely to granted disability on the basis of depression or PTSD, something like that -- I don't' know if that might be a possibility for you?

 

[redaxe]

If ours was neuroinflammatory condition wouldn't prednisone be a frontline drug of choice?

 

[ahmo]

@Mary PTSD also seemed to be the basis for my disability. It was when my nervous system was drastically overwrought, and I was, in fact, trigerred by everything. I had to appeal the initial MD evaluation, was then seen by a psychologist.

 

[Mary]

@Mary PTSD also seemed to be the basis for my disability. It was when my nervous system was drastically overwrought, and I was, in fact, trigerred by everything. I had to appeal the initial MD evaluation, was then seen by a psychologist.

My nervous system was overwrought too, though I was definitely crashing, had PEM, and that's why I had to stop working. I guess I was lucky - I didn't have to see a shrink, though I did see an SSDI doctor who of course found nothing. I don't know how my doctor did it, but am eternally grateful to him! I have wondered if childhood trauma played a role in my developing CFS as high anxiety was my normal state of being for years, and I know it took a toll on my body. Or perhaps it weakened me to make way for an opportunistic pathogen of some sort.

 

[serusaert]

i've been taking 30 mg ibudilast (10 mg 3 X day) for the last two weeks and i can definitely say this: neuropathic pain has decreased by approximately 60%. i feel that ibudilast is useful for the flavor of CFS that i have which seems to emphasize neuropathy.

for neuropathy, i also take gabapentin 300 mg at bedtime. i do take various supplements, and, additionally, i do the ketogenic diet - i have been in ketosis for about three months now.

 

[Wishful]

I also have tried various immune-affecting compounds and found no significant effects. Well, prednisone worked the first two times I tried it, but then stopped working. LDN reduces my muscle aches, but I don't think it's working as an anti-inflammatory.

I agree with several others about the problem being in the microglial mitochondria; an over-response to normal signals, which feeds back into the immune system.

As for Ibudilast, I had great hopes for it, but it had no effect on me (tried various dosages).