How to lower the level of pro-inflammatory cytokines?
- Thread starter Ekaterina
- Start date
charles shepherd
Senior Member
- Messages
- 2,239
This was a topic that was discussed during the workshop on neuropathology at the UK Research Collaborative conference in Newcastle a few weeks ago
From my MEA website report:
TUESDAY AFTERNOON: Research Workshops
Repeating the very successful format of the 2015 conference, delegates and speakers spent the afternoon by splitting into small groups that attended expert-led workshops. The workshops covered autonomic dysfunction (Dr James Frith, Newcastle University), clinical trials (Dr Esther Crawley, Bristol University), fatigue (Professor Julia Newton, Newcastle University), neuropathology (Richard Reynolds, Professor of Cellular Neuroscience, Imperial College, London), patient-reported outcome measures (Dr Kirstie Haywood, Warwick University).
Along with Professor Montoya, Professor Norman Booth, experts in neurology, neuropathology and neuroimaging, and two of the medical students the MEA sponsored to attend the conference, I attended a two hour neuropathology workshop.
Topics discussed included linking neuropathology to symptoms; the findings of dorsal root ganglionitis that have been reported from the UK post mortem research group; brain banking; lumbar punctures; are abnormalities in the brain focal or general?; and where do we go next in relation to investigating the neuropathology of ME/CFS with neuroimaging etc.
This group also briefly discussed the role of cytokine-mediated neuroinflammation and the new clinical trial involving a drug called anakinra that inhibits the pro-inflammatory cytokine IL-1. A member of the clinical trials group from The Netherlands had also joined this workshop.
Key reference:
Cytokine inhibition in ME/CFS – new clinical trial: http://www.trialsjournal.com/content/16/1/439
So you might like to look at the info on the clinical trial
On a practical note in relation to ME/CFS, this is an approach to treatment that is well worth investigating (and there are other drugs that have been looked at) but this is not something that a doctor is going to prescribe (certainly here in the UK) to people with ME/CFS outside a research setting in our current state of knowledge
From my MEA website report:
TUESDAY AFTERNOON: Research Workshops
Repeating the very successful format of the 2015 conference, delegates and speakers spent the afternoon by splitting into small groups that attended expert-led workshops. The workshops covered autonomic dysfunction (Dr James Frith, Newcastle University), clinical trials (Dr Esther Crawley, Bristol University), fatigue (Professor Julia Newton, Newcastle University), neuropathology (Richard Reynolds, Professor of Cellular Neuroscience, Imperial College, London), patient-reported outcome measures (Dr Kirstie Haywood, Warwick University).
Along with Professor Montoya, Professor Norman Booth, experts in neurology, neuropathology and neuroimaging, and two of the medical students the MEA sponsored to attend the conference, I attended a two hour neuropathology workshop.
Topics discussed included linking neuropathology to symptoms; the findings of dorsal root ganglionitis that have been reported from the UK post mortem research group; brain banking; lumbar punctures; are abnormalities in the brain focal or general?; and where do we go next in relation to investigating the neuropathology of ME/CFS with neuroimaging etc.
This group also briefly discussed the role of cytokine-mediated neuroinflammation and the new clinical trial involving a drug called anakinra that inhibits the pro-inflammatory cytokine IL-1. A member of the clinical trials group from The Netherlands had also joined this workshop.
Key reference:
Cytokine inhibition in ME/CFS – new clinical trial: http://www.trialsjournal.com/content/16/1/439
So you might like to look at the info on the clinical trial
On a practical note in relation to ME/CFS, this is an approach to treatment that is well worth investigating (and there are other drugs that have been looked at) but this is not something that a doctor is going to prescribe (certainly here in the UK) to people with ME/CFS outside a research setting in our current state of knowledge
Last edited:
@Ekaterina - I have a massive problem with inflammation just had a PLAC test which was off the scale!!!, I've just seen a neurologist because of the level of crushing pain in my head, due to have a scan but I'm very sure its down to inflammation, be very interested if you find any more info or use anything that actually helps with this.
I'm in realy bad shape right now due to my gut problems. I developed inflammation of my intestines 2 weeks ago and my CFS symptoms increase very badly. I have burning in my body, pain in my head and other nasty things I had before, but much more intensive. I think it's adhesions that provoke inflammation (had surgery 2 months ago) and I need to get rid of them as soon as possible. And I'm lookind for something that can help with increased cytokines symptoms.
I found several medications that used in treatment of rheumatoid arthritis and psoriasis. Mb if nothing will change I will use it.
But I'm wondering is there someone that tried to reduce cytokines and what was the outcome.
I found several medications that used in treatment of rheumatoid arthritis and psoriasis. Mb if nothing will change I will use it.
But I'm wondering is there someone that tried to reduce cytokines and what was the outcome.
I'm just looking at Atrantil, I have SIBO as well, if you do as well that could be helping the gut inflammation.
I can't remember what it was for but someone in the US has also been prescribed Roberts Formula, good for those who can't tolerate l-glutamine. You need to get the inflammation in your gut down, that will be having a massive impact on you. I tried Golden Paste for a couple of days for the head pressure, wasn't sure if it helped but others swear by it, with you having just had surgery????, the doses are quite small though so maybe you could try something like 1/8th tsp.. I don't know, just throwing things out....I am going to make some more anyway, but just a small amount as I'm intolerant of so much stuff but its worth another try for me. Get the gut right and the rest will follow, I'm trying.......some say very
I can't remember what it was for but someone in the US has also been prescribed Roberts Formula, good for those who can't tolerate l-glutamine. You need to get the inflammation in your gut down, that will be having a massive impact on you. I tried Golden Paste for a couple of days for the head pressure, wasn't sure if it helped but others swear by it, with you having just had surgery????, the doses are quite small though so maybe you could try something like 1/8th tsp.. I don't know, just throwing things out....I am going to make some more anyway, but just a small amount as I'm intolerant of so much stuff but its worth another try for me. Get the gut right and the rest will follow, I'm trying.......some say very
Last edited:
snowathlete
Senior Member
- Messages
- 5,374
- Location
- UK
My ME has always been inflammatory but got a lot worse when I was on treatment with KDM for possible Bartonella. That led to me getting ulcerative colitis. I take mesalazine, prescribed, for the UC which helps a little with that but also with my systemic inflammation. But it is not enough, It fluctuates but my inflammation is horrid.
I have just started taking Boswellia in the hope that it will help. I took it at the start of this year and it did seem to help but not then its effect wore off, so I stopped taking it. Although it didn't seem to last it is the only supplement I have ever taken which seemed to help with anything. Maybe worth a go.
I have just started taking Boswellia in the hope that it will help. I took it at the start of this year and it did seem to help but not then its effect wore off, so I stopped taking it. Although it didn't seem to last it is the only supplement I have ever taken which seemed to help with anything. Maybe worth a go.
minkeygirl
But I Look So Good.
- Messages
- 4,678
- Location
- Left Coast
@maryb. Just found this. I'm going to look into it
http://forums.phoenixrising.me/inde...-the-sibo-game-changer-it-claims-to-be.39839/
http://forums.phoenixrising.me/inde...-the-sibo-game-changer-it-claims-to-be.39839/
Thanks @minkeygirl , I've read some posts on FB from patients using this and they have been impressed, I had a massive dose of rifaxamin several months ago (March) but got SIBO back again on test 2 weeks ago. Some docs are using longer term low doses of rifaxamin with the Atrantil
Last edited:
Key reference:
Cytokine inhibition in ME/CFS – new clinical trial: www.ncbi.nlm.nih.gov/pubmed/26438161
So you might like to look at the info on the clinical trial
On a practical note in relation to ME/CFS, this is an approach to treatment that is well worth investigating (and there are other drugs that have been looked at) but this is not something that a doctor is going to prescribe (certainly here in the UK) to people with ME/CFS outside a research setting in our current state of knowledge[/QUOTE]
@charlesshepherd Not sure this is the right ref. Takes me to a paper re Ca channels, without a full abstract.
Cytokine inhibition in ME/CFS – new clinical trial: www.ncbi.nlm.nih.gov/pubmed/26438161
So you might like to look at the info on the clinical trial
On a practical note in relation to ME/CFS, this is an approach to treatment that is well worth investigating (and there are other drugs that have been looked at) but this is not something that a doctor is going to prescribe (certainly here in the UK) to people with ME/CFS outside a research setting in our current state of knowledge[/QUOTE]
@charlesshepherd Not sure this is the right ref. Takes me to a paper re Ca channels, without a full abstract.
charles shepherd
Senior Member
- Messages
- 2,239
@charlesshepherd Not sure this is the right ref. Takes me to a paper re Ca channels, without a full abstract.[/QUOTE]
Mea culpa!
This is the correct link:
http://www.trialsjournal.com/content/16/1/439
CS