1. Guest, to read the 'News in Brief' post for w/c 11th Nov click here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

How the brain plays a role in rheumatoid arthritis inflammation

Discussion in 'Health News and Research unrelated to ME/CFS' started by Indigophoton, Jun 18, 2018.

  1. Indigophoton

    Indigophoton Senior Member (Voting Rights)

    Messages:
    848
    Likes Received:
    9,732
    Location:
    UK
    I thought this was interesting, particularly given Younger's upcoming study on neuroinflammation in ME, and also for the possibility of a future breakthrough in treatments for RA that could potentially be of relevance to ME. Any thoughts, @Jonathan Edwards?
    The article, https://medicalxpress.com/news/2018-06-brain-role-rheumatoid-arthritis-inflammation
    The paper, https://www.nature.com/articles/s41467-018-04648-0
     
    ladycatlover, merylg, Hutan and 7 others like this.
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    5,690
    Likes Received:
    58,192
    Complete tripe I am afraid. We know that people with RA feel fatigued when they have inflammation in joints and other tissues like pericardium. We know that is predominantly mediated by TNF and IL-6. If you block the cytokines or remove the B cells that trigger the cytokines to be produced the fatigue goes away completely. I cannot see what different patterns of connectivity can possibly have to do with brain inflammation. Maybe they just think these are pictures of people feeling unwell because of cytokines thinking differently. I am prepared to bet nobody replicates this.

    And what is the point? We can deal with fatigue in RA if it is due to inflammation - by treating the inflammation.
     
  3. Indigophoton

    Indigophoton Senior Member (Voting Rights)

    Messages:
    848
    Likes Received:
    9,732
    Location:
    UK
    I admit to knowing nothing about RA myself, but I'm a bit staggered that the researchers didn't know that - it's obvious when you point it out.

    Thanks for the response.
     
  4. nonstopflu

    nonstopflu Established Member

    Messages:
    22
    Likes Received:
    68
    @Jonathan Edwards

    what's the difference between CIC's and cytokines? don't CIC's cause inflammation, too?
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    5,690
    Likes Received:
    58,192
    What are you referring to as CIC's?
    If you are meaning immune complexes then circulating immune complexes do not themselves cause inflammation but immune complexes in the extravascular space, which may be derived from circulation, can do, via binding to Ig Fc receptors and stimulating cytokine release. There is a very complicated story involved. I wonder why you ask in this context?
     
  6. nonstopflu

    nonstopflu Established Member

    Messages:
    22
    Likes Received:
    68
    the best remedy for pain, stiff joints and brain fog is something called Wobenzyme N. Also, no side effects! (typically, anything that works has bad rebound pain, and/or causes stomach pain.) The literature claims that it breaks down Circulating Immune Complexes, so now I'm trying to understand them to "reverse engineer" what's going on in my body. I'm not sure if CICs are the problems in the first place, so I have to understand what they are better, or what else this supp could be breaking down.

    This has really been a miracle for me... If you see the reviews on amazon, 1400+ reviews, 4.3 stars and many ppl w comments similar to mine.. Overall, the supplement I can't live without, and far, far better than any of the rx remedies I've tried.

    Ingredients (3 pill dose):
    • Bromelain 135mg
    • Chymotrypsin 3 mg
    • Pancreatin 300 mg
    • Papain 180 mg
    • Rutin 150mg
    • Trypsin 72 mg

    Comments:
    • Bromelain & Rutin both help me, but much more mild than when combined into wobie. Vegetarian proteolytic enzymes either do nothing or are mild. Bromelain is the best.
    • Not sure whether pancreatin or trypsin is doing the "heavy lifting" in breaking down CIC's (or if "CICs" are the culprit in the first place). I suspect trypsin is better at this, though, because I've taken a supplement w pancreatin and the effect was mild
    • Not sure if taking this long term is safe, so that's another thing I've got to investigate.
    • I take the "loading dose" which is 15 pills in divided doses. Not sure how long the "loading dose" is meant to be sustained.
     
  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    5,690
    Likes Received:
    58,192
    Sorry @nonstopflu, but this is all pseudoscience - complete nonsense stuff. (Sorry to be blunt but I spent my research career on immune complexes and suchlike and worked out the mechanism of inflammation in RA, which indirectly is why I am here.) Circulating immune complexes do occur in rheumatoid arthritis but there is no reason to think they have anything to do with most other sorts of joint pain. Eating enzymes is not going to touch immune complexes anyway. Science does not work unless you get all the right bits in the right order. Just like a Mercedes car - it does not work unless you put the components in the right places - the immune system is that complicated.
     
  8. Trish

    Trish Moderator Staff Member

    Messages:
    17,740
    Likes Received:
    92,928
    Location:
    UK
    The substance @nonstopflu mentions seems like a preparation of things to help with digesting food. I imagine it is possible that for someone who has a problem producing enough of some digestive enzymes they might find it helps improve some symptoms, even if the theory they use to explain this improvement is incorrect.
     
    sea, merylg, Lisa108 and 3 others like this.
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    5,690
    Likes Received:
    58,192
    I like to be honest, @Trish, as you know. The chances of anything in this mixture being of any use to pains and brain fog through any specific means are about 0.00001%. The chances that this mixture acts as a placebo are about 99.99999%. For a company to claim that their oral enzyme product breaks up immune complexes is a bit like selling timeshares on Lanzarote that have not been built yet - and never will be.
     
  10. LightHurtsME

    LightHurtsME Senior Member (Voting Rights)

    Messages:
    122
    Likes Received:
    997
    Location:
    UK
    Wobenzyme is used extensively in countries like Germany and some neighbouring countries for inflammation-related problems, for example in helping healing injuries. Just because it is virtually unknown in the UK - where healthcare and NHS is very conservative - doesn't mean it is without merit.
     
    merylg likes this.
  11. Trish

    Trish Moderator Staff Member

    Messages:
    17,740
    Likes Received:
    92,928
    Location:
    UK
    Very much appreciated.

    I was carefully avoiding the p word. (placebo). I agree I can't see any way improving digestion can influence brain fog or inflammation except perhaps in ensuring a good supply of nutrients if someone has deficiencies. Maybe changing the balance in the gut bacteria that some researchers are suggesting influences health in other ways.
     
    merylg and ladycatlover like this.
  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    5,690
    Likes Received:
    58,192
    My comments had nothing to do with being known or unknown or where you live. Injuries have nothing to do with circulating immune complexes either. Germany tends to have a high rate of pseudoscientific alternative therapy use in rheumatology.

    And it has nothing to do with me being conservative I think, since I am here because I developed a new treatment that nobody else would take interest in, and showed with double blind controlled trials that it was very effective! I am probably the least conservative rheumatologist in the world. And if you consider rheumatoid arthritis (the disease that does have CIC) it is quite interesting to look at which countries were innovators:

    Gold UK
    Sulphasalazine UK
    Penicillamine France
    Methotrexate USA
    Anti-TNF UK
    Rituximab UK
    Anti IL-6 rec Japan, UK

    Germany - zilch.
     
  13. nonstopflu

    nonstopflu Established Member

    Messages:
    22
    Likes Received:
    68
    what is it?
     
    merylg likes this.
  14. LightHurtsME

    LightHurtsME Senior Member (Voting Rights)

    Messages:
    122
    Likes Received:
    997
    Location:
    UK
    Yes, I know who you are and am familiar with your work. And I am eternally grateful that despite how the rituximab trial turned out in Norway, you are still here and supporting us (and I get the impression that you are doing it for the reasons of justice, among other things - which I appreciate even more). I especially value your involvement with regards to taking on PACE and related nonsense, raising awareness among those who matter and can influence things in a positive way for ME sufferers. I hope you don't mind me saying (and without wanting to reveal personal information about myself): I often remind other ME sufferers of your positive involvement in ME matters as a way to motivate fundraising for ME research.

    But I have also lived in several countries on more than one continent and in developing countries too and nowhere was healthcare as bad as in the UK. The only thing that the NHS ever got right for me is prescribing antibiotics for a bog standard kidney infection. For a relative of mine, we had a doctor who could not recognise tonsillitis and we had to escalate this to a higher up doctor to get penicillin prescribed for bog standard tonsillitis (who then educated the first doctor in front of us by showing them on my relative what tonsillitis looks like). The incompetence is staggering.

    Unfortunately, the opinion about NHS among doctors outside the UK, in Europe, is generally unfavourable, from what I have seen. To quote one doctor who listened to my experiences: "I have always known that UK healthcare is bad but I didn't realise it was this bad. Have these doctors even studied medicine? Do they know that their patients come first?" So I guess I will always differ in opinion on NHS from a lot of people because I have experienced better.

    (Hoping I am not taking the thread off-topic too much.)
     
    merylg, Daisybell and Indigophoton like this.
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    5,690
    Likes Received:
    58,192
    rituximab
     
    merylg and ladycatlover like this.
  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    5,690
    Likes Received:
    58,192
    Yes, and I agree with most of that but it has nothing to do with being conservative. It has to do with with no funding. The expenditure per head on health care in the UK is about 70% of what it is in most other western Europe countries. Since a considerable proportion of health costs are fixed that must mean that a large part of NHS care is hopelessly inadequate. And it is. Because for some reason the UK public do not want to pay for health care - or do not want to elect politicians who will arrange payment.

    I keep saying I did;t realise just how bad UK healthcare is. My recent experiences are that it is totally unsafe.

    But I don't think that has anything to do with doctors not studying medicine. Over the years I have been regularly to medical conferences and it seems clear to me that UK doctors know at least as much medicine as those from other countries and probably more. What may be different is that they tend not to use unproven treatments because they are less involved in private practice or commercial hospitals. They believe that the patient does come first in the sense of not selling them useless stuff.

    The sad thing is that in the last ten years or so bureaucracy and politics has swamped even the good doctors. Quackery has become standard in the NHS in the form of IAPT etc.
     
  17. TiredSam

    TiredSam Moderator Staff Member

    Messages:
    7,005
    Likes Received:
    33,740
    Location:
    Germany
    Having lived in the UK for my first 26 years and Germany for my second 26 years, I can agree with this:

    I can also agree with this:

    With the last two words deleted. Whilst I would much rather be ill in Germany and my experience of the health system here is much better than in the UK, German doctors will believe and peddle any old twaddle. The doctor in my village swung a pendulum over my son for allergies and charged my wife 40 euros for private treatment. The only time I've ever insisted on a refund. The doctor in the next village told me 95% of his patients come to him with psychosomatic complaints, then shoved his finger up my arse to check my prostate. Not that I asked him to, I went there to complain about a 6-week headache (the onset of my ME). I haven't been back. Private doctors here set themselves up as an authority on ME and charge a fortune for vitamin B12 injections and other such tosh.

    The fact that Wobenzyme is used extensively in countries like Germany doesn't mean a lot. In my experience German doctors and their patients are as susceptible to quackery and pseudoscience as anyone else (especially if it's "natural").

    Sorry to be so ranty, but it pisses me off.
     
  18. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

    Messages:
    1,916
    Likes Received:
    13,878
    I think we have to be careful with the word “inflammation”. It seems to have been hyjacked by the snake oil salesmen somewhat.

    I see this a lot for aids to digestive conditions where pain is being equated to inflammation ...this is not correct you can have pain without inflammation for a variety of reasons.

    This is a marketing trick to add credibility/validation to pain and sell more product.

    I’m not trying to invalidate anybodies pain by the way ....just pointing out that there is a lot of unregulated garbage out there when it comes to supplements and ‘natural’ remedies
     
    Mij, merylg, ladycatlover and 3 others like this.

Share This Page