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Carmine Pariante's MRC research award-Persistent fatigue induced by interferon-alpha

Discussion in 'General ME/CFS News' started by Dolphin, Dec 21, 2011.

  1. Firestormm

    Firestormm Guest

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    Morning Marco. I agree with what you've said/asked. We simply don't know enough do we at this juncture? Apologies for the choice of words too.

    It could (in some ways I hope) lead to sub-categorization but overall I think it might lead to quantification and confirmation that the immune system IS playing a role and maybe what the role is.

    Same with the 'Sjorgen's' study too. Of course it would have been great (more supported) if someone had applied who wanted to extract say a coxsackie b cohort from the general 'pot' and do similar to them - but presumably no-one did and anyway I think I can presume it was more 'convenient/efficient/economic/relevant' to use the above and try to establish baseline models and then apply them.

    What these studies don't do is 'virus-hunt'. They are operating under the hypothesis that CFS is a 'state' (as you suggest) that a trigger (in this case either HPV itself for some or IFN-A for others) results in key CFS symptoms and debilitation.

    I agree. A viral trigger is but one route. But I believe personally that the immune system - whatever the trigger - plays a key role regardless and I am pleased they are looking at the immune system and symptoms rather than virus-hunting to be honest.

    Not that I wouldn't have granted the money elsewhere but we don't know what else was received by way of applications. And when you get down to it - this wasn't a huge amount of money to begin with.

    BUT. For the British MRC funded by the government - these studies and the allocation to bio-medical research for CFS/ME after all the history of funding afforded to psycho-social projects - IS to be welcomed IMHO.

    It might seem a round-a-bout route to some, even irrelevant to others, I have seen it called 'a disgrace', and 'cop-out'; but if it helps establish a possible or several possible reasons why the immune system is dysfunctional or stuck in that 'hyper-state' and leads to these CFS-like symptoms - then I think it will go further than other government-agency studies (in particular) have to date.
    oceanblue likes this.
  2. Snow Leopard

    Snow Leopard Senior Member

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    The problem is that one or two small scope studies on potentially similar cohorts isn't enough to (a) understand fatigue in these illnesses (b) find useful similarities between different groups. The problem is that we aren't looking at enough variables. We need fifty studies like this, each investigating different things.
    Wildcat and WillowJ like this.
  3. Firestormm

    Firestormm Guest

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    Yeah you're right of course Snow. MRC had to start somewhere though. It set aside the funding, invited applications and judged that these meet their parameters and I guess stood a better chance of advancing knowledge than those they presumably rejected. Kind of limited though by who applies. Hopefully all of this can be built-upon by other similar studies - or perhaps they won't have to?!
  4. FancyMyBlood

    FancyMyBlood Senior Member

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    I'm suprised nobody brought up earlier research between the established immune similarities of interferon-alpha induced symptoms and ME/CFS. For example, Andrew Miller recently demonstrated that Depression and fatigue during chronic IFN-? administration were associated with alterations in the expression (OAS2) and transcriptional control (CREB/ATF) of genes linked to behavioral disorders including CFS and major depression, further supporting an immune contribution to these diseases.

    Another interesting observation comes from Brigitte Huber, who stated in the past that both interferon-alpha and EBV are able to activate a HERV-K18 and lead to CFS symptoms. A study from her has now been completed and if I had to guess I'd say these results are positive. In a recent TWIV episode, Vincent Racaniello stated that he believes something more is at play than only EBV and 'to keep your eyes open'. My gut feeling tells me he's refering to this paper.

    All in all, I'm pretty positive about this research, especially given the already established (and probably) coming literature.
    Firestormm likes this.
  5. Enid

    Enid Senior Member

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    Yes I much agree - "keeping one's eyes open" - not an ME study but part of the building blocks in understanding more of human biological systems and pathologies.
  6. Ember

    Ember Senior Member

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    I'm afraid that I can't share your enthusiasm. A cohort that continues to experience debilitating persistent fatigue, and other symptoms that are similar to CFS, for 6 months or even one year after the cessation of IFN-alpha may seem like a well-lit place to look. But it doesn't seem to me the appropriate place to find a model for recovery from our illness, one that doesn't tend to resolve in 6 months to a year.

    What are the sought-after keys to recovery?

    For the purpose of modelling a more timely recovery for us, this cohort may turn out to be a convenient place for the authors to look for such keys as illness and treatment perceptions. I assume that's another name for illness beliefs.
    Wildcat likes this.
  7. Firestormm

    Firestormm Guest

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    Thanks FMB. Interesting paper from Miller will try and read the full thing when I can. Hadn't seen that video either. :thumbsup:

    Morning Ember,

    May I enter into the realms of 'What if?' for a momento? :D

    I don't think it can be denied that we are all different. Some of us do indeed manage a 'recovery' or even 'remission' after six months or between six months and a year - or any period in between.

    I seem to recall that after fumbling along back at work off and on, I eventually was persuaded to take some time out and was able to return after 8 months (first time round).

    Anyway, besides the point I suppose. What if those who are 'cycling' or 'fluctuating' or relapsing/remitting are doing so because of repeated viral infections?

    Say this model is established and it says 'Your immune system is screwed. The thermostat is on 'override'.' For some people prolonged rest and recuperation MIGHT be resulting in that thermostat falling - but the wiring remains screwed.

    You manage some degree of functional stability. You still can't 'dance the tango' but you are able to go from week-to-week month-to-month with no worsening of symptoms.

    You might even be able to increase your functionality and even (dare I say it) exercise or return to some better state of employment.... whatever.

    All the time your thermostat is below what it was..... waiting....

    Along comes a spider (virus) and scares the beejesus out of it!!

    Same model. Different trigger (perhaps). And this is repeated (not for everybody - and we may not know why certainly not in this study) over many many years.

    Of course some of the original functionality might never return (for some people). Your overall capacity might have been significantly (or any variation thereof) reduced.

    All the time of any 'remission' your immune system is 'tick tick tick' in the background. Sometimes a virus might pass and not effect it but sometimes BANG! Relapse-ville.

    Whether or not the 'immune-profiles' is affected by time when comparisons are made with CFS patients it would be interesting/important to see.

    For those of us who are indeed 'stuck' in a low functioning state for a significant period - are our 'immune-profiles' different?

    What is it that determines how long the period of 'debilitation' continues? What determines the degree of severity? What prompts a 'remission'? What a 'relapse'?

    I think some things are naturally over and above any one research study. What I hope is that this one study might build on what is hypothesised already and make it more relevant to (some within the) 'CFS-pot'.

    Edit:

    Am I talking about Autoimmune disease? If so it was accidental. Though we do seem to be heading in that direction don't we? Well some researchers appear to be.
  8. Dolphin

    Dolphin Senior Member

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  9. Dolphin

    Dolphin Senior Member

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    Not sure this has been highlighted here:
  10. Valentijn

    Valentijn Activity Level: 3

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    What, Chalder's getting of the false illness belief horse? I'm sure she'll still somehow conclude that CBT administered by herself is the only cure.
    Enid likes this.
  11. Dolphin

    Dolphin Senior Member

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    I certainly wouldn't take any physical interpretation for granted. As we saw with two of this group with HIV fatigue (as Simon highlighted here http://forums.phoenixrising.me/inde...io-psychosocial-model.4593/page-2#post-302800), they said:
  12. Dolphin

    Dolphin Senior Member

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  13. Dolphin

    Dolphin Senior Member

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    This does not fill me with confidence:

    http://www.biomedcentral.com/imedia/1169912504863162_comment.pdf




    Valentijn and Simon like this.
  14. globalpilot

    globalpilot Senior Member

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    This person is a psychiatrist at Kings College London.

    This idea of excessive rest is bizarre. I was working out much more than the average person when I crashed as well as walking to/from work 5days/week.
    I still walk quite a bit.

    Hardly resting excessively.
    Enid, Valentijn, Sean and 1 other person like this.
  15. Dolphin

    Dolphin Senior Member

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    Me neither. I got an infection and then went on an adventure trip with the school (would have had to pay for another guy to drop out if I didn't go (long story) so thought what the harm ...). Anyway, when I came back I missed two days of school and that was it - I had lingering effects of an infection so didn't do sports but still plenty of activity in my day e.g. mile walk to bus stop. There is this stereotype out there that everyone got an infection and then took weeks or months of rest. But I know this doesn't fit plenty of people.
    Sean likes this.
  16. Sean

    Sean Senior Member

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    I certainly do not fit into the excessive rest / activity avoidance / deconditioning model. Not even close. Not when I first got sick, and not now. I still remain as active as I can, easily above the very minimal level required to avoid classical physical deconditioning.

    And here's the real rub: I enjoy being active, I like doing physical and social stuff and being involved in the world. It frustrates the hell out of me that I can't be more active, that I have to watch my life pass by and miss out on all the normal stuff healthies take for granted.

    Secondary gains from the 'sick role', my arse. There are no 'benefits' to be had from living like this. Nobody would do it by choice.
    ukxmrv likes this.
  17. alex3619

    alex3619 Senior Member

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    In order to validate the CBT/GET and illness belief models, first they need a biomarker. Then they can hang future studies on this marker. If they accumulate evidence in studies that are designed to support rather than test their hypotheses, then something amazing happens: they have a biological basis for psychobabble. To be scientific they, or somebody, has to thoroughly test their claims, something that has not really happened with the illness belief model as its too vague for scientific enquiry.
    Enid, Valentijn and Jarod like this.
  18. alex3619

    alex3619 Senior Member

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    I am not convinced that most long term patients even remotely fit the excessive rest / activity avoidance / deconditioning model, nor even boom-bust. These may be transitory patterns seen in some patients when they are trying to cope and don't know how, but most patients tend to wind up with some form of pacing, which is something else entirely. One issue is that they keep looking at mild patients, and short to medium-duration of illness patients. Where are the severe, and the very long term?
    Sean and Enid like this.
  19. Valentijn

    Valentijn Activity Level: 3

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    Ah, but if you weren't resting too much, they'll accuse you of pushing yourself too much - either way, they find a way to blame the patient for getting sick after, erm, getting sick.

    I missed a week of classes after my initial infection, but stayed active around the house. Certainly not bed bound or even couch bound. Then had another week off due to holidays. Started back to class after that, getting a ride to class then walking briskly for 10 minutes after class to catch a bus. Leg pain started then, and PEM and OI gradually got worse while I kept up the same amount of activity.

    When they do acknowledge an infection prior to our "false illness beliefs" developing, they always make it sound like we have some semi-hysterical or control-freak reaction to being sick. Reality is that I got sick, reacted in a normal and non-extreme way to being sick, and things just gradually got worse and worse.

    I also find the theories of inappropriate behavioral or cognitive reactions to illness to be baffling for ME/CFS. I'd managed to get sick before (some pretty intense - more so than the ME/CFS pre-infection), and recover normally. Pretty silly to propose that we suddenly develop an abnormal reaction to normal illnesses after having many normal reactions in the past.
    Sean likes this.
  20. Enid

    Enid Senior Member

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    It seems to me Chalder will always try to prove the efficacy of CBT (in whatever). That's all she has - not a medic but training - a psychiatric nurse. Hoping the psyche brigade fade into the background now.
    Valentijn and Sean like this.

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