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Mechanisms of chronic pain and fatigue [Trial in progress, April 2018]

Discussion in 'Fibromyalgia and Connective Tissue Disorders' started by Andy, Apr 20, 2018.

  1. Andy

    Andy Committee Member

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    Study funded by Arthritis UK
    So, while all the blurb about the study refers to fibromyalgia, apparently the entire study cohort could actually have ME instead, as they don't seem to discriminate between the two. :banghead:

    Link to trial details here
     
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  2. MeSci

    MeSci Senior Member (Voting Rights)

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    I don't like the sound of "we will induce a mild state of inflammation using a routine clinical Typhoid vaccination"

    Don't ME patients experience inflammation all/most of the time anyway?
     
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  3. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    This is so stupid. I note Arthritis Research UK has presented at CMRC before. They should know better than this.
     
    Last edited: Apr 20, 2018
  4. Andy

    Andy Committee Member

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    Our more science savvy members might give you a more accurate answer but I'm under the impression that while it's highly likely, it's not been proven definitively.
     
  5. Esther12

    Esther12 Senior Member (Voting Rights)

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    It was reported on a PACE funding page that Arthritis UK were planning to fund a further follow-up to PACE, but Arthritis UK then stated that this was not true.
     
  6. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Interesting. I should certainly hope not.
     
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  7. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Location says Brighton, so I assume it will involve Neil Harrison.
     
  8. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Him again!
     
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  9. MeSci

    MeSci Senior Member (Voting Rights)

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    Well, I'm not terribly 'science savvy' since my funny turn 2 years ago, but I do have a Bachelors and a Masters, both in science! I certainly take a keen interest as far as my impaired brain will allow.

    Sorry, but felt I had to defend my degrees! :)
     
    Last edited: Apr 20, 2018
  10. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    They've replied to one of my incendiary tweets saying:



    I pointed out that it's either poor wording in the trial registry or it's poor trial design. Hopefully it's not both!

    But there's a huge issue of phenotyping already, so smushing everyone together seems naive at best.
     
  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    What worries me here is the suggestion that 5% of the population have 'fibromyalgia'. If fibromyalgia is a distinct syndrome causing serious disability and requiring serious research I don't think it can affect more than about 0.1%. If it was more I would have met these people in clinic. If this study is canvassing for recruits goodness knows what sort of cohort they will end up with.

    If this is Harrison, as seems likely, I am disappointed.
     
  12. Andy

    Andy Committee Member

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    Huh? Sorry if you felt I was referring to you, I was actually calling myself less than science savvy. And you certainly beat me when it comes to degrees. :)
     
  13. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Well if they're putting FM and ME together, that might raise it to 0.2-0.4%! Maybe they're planning on padding out the numbers with some other illnesses?
     
  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    My impression is that they are looking for two groups. One with 'fibro' and one with ME.
     
  15. LightHurtsME

    LightHurtsME Senior Member (Voting Rights)

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    I have noticed that some doctors seem to be using fibromyalgia as a synonym for chronic pain and ME as a synonym for chronic fatigue. So there are people who have a diagnosis of e.g. lupus and fibromyalgia and ME - while they likely have lupus of which some symptoms include pain and fatigue.

    Worrying trend and complicates things going forward.
     
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  16. Squeezy

    Squeezy Senior Member (Voting Rights)

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    I'm concerned for the sick people offering themselves up to have Typhoid vaccinations to prove the existence of our illness!

    If it can cause measurable brain inflammation, it's surely highly inadvisable for a pwME to risk worsening their health still further?

    There has to be a better way to design this study?
     
  17. Andy

    Andy Committee Member

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    So I decided to email to enquire what selection criteria they were using to identify ME. This is the response I received.
    <sarcasm>I feel so reassured by that answer that they know what they are doing...</sarcasm>
     
  18. alktipping

    alktipping Senior Member (Voting Rights)

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    some people with m.e also have dx of fibro possible mis diagnosis due to ridiculous amounts of pain many people with m.e have to cope with too .
     
  19. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    I’ve never been especially thrilled with how arthritis uk views fibromyalgia. I went onto their website and have copied the bits I found questionable rather than the whole sections so this isn’t the complete picture. Whilst they do recognize it I see their recognition and approach as quite BPS. NB. Under the What causes fibromyalgia? Section the full section is less objectionable to the summary I’ve quoted.

    The numbers affected is given as 4% here, 2 600 000 people. Given FM predominantly affects females that’s a lot of women in all over pain? I had seen 800 000 stats before.

    The section on sleep whilst recognizing it as a key factor and serious, then recommends CBT, basic sleep hygiene and advises against drugs. From an ME perspective this would be totally inadequate for my own sleep and for what can be something biologically impaired, I’ve needed sleep meds since two years in to illness.

    I also note they’re funding a whoPping £800 000 + CBT over the phone as treatment study. Whilst they may just be putting in early management to prevent long term illness why call this CBT and so on and it’s a lot to invest and with The Whole fit net CFS thing, suggests a continuation of behavioral interventions.

    Edit. Their tips recommendations seem to try one extreme, push on and ignore symptoms (dangerous?) or the other, listen to your body and be kind, have they a clue ?



    “Fibromyalgia | Arthritis Research UK”

    https://www.arthritisresearchuk.org/arthritis-information/conditions/fibromyalgia.aspx


    What is fibromyalgia?
    Print, Download, Order
    Fibromyalgia is a long-term (chronic) condition that can cause widespread pain and tenderness over much of the body. It's quite common – up to 1 person in every 25 may be affected.


    What causes fibromyalgia?

    The exact causes of fibromyalgia aren’t known, but anxiety, physical and/or mental trauma, and sleep disturbance are thought to play a part. It isn't caused by inflammation and it's thought it may be related to chemical changes in the body's pain pathway



    Physical therapies for fibromyalgia

    Your doctor may refer you to a physiotherapist or occupational therapist for further treatment and advice.

    Physiotherapy can help you to improve your posture, physical function and quality of life, and gradually become more active. Physiotherapists can also advise you on relaxation techniques.




    Psychological therapies

    Pain is never a purely physical experience, especially if it lasts a long time. Pain can affect your mood, making you feel sad, anxious, frustrated, angry or afraid. Your emotional response to pain can affect your behaviour. For example, fear that movement will increase your pain may lead you to avoid activity. This, in turn, can affect aspects of your physical health – for example as your muscles become weaker through lack of use.

    Psychological approaches to pain management aim to address the emotional aspects of pain. When thoughts, habits (behaviour), physical sensations and emotions are so closely linked it can be overwhelming. Therapies such as cognitive behavioural therapies (CBT) often focus on separating out these different aspects of your experience of pain, breaking the problem down into more manageable chunks.

    Making a small change in one area, for example behaviour, can often improve both your emotional well-being and your physical health so that you can get more out of life. Many people feel doubtful about this approach at first but it has produced some good results.




    Poor sleep is a key symptom of fibromyalgia, so getting enough good-quality sleep is an important part of the treatment. Not only will it help with tiredness and fatigue but you may also find it helps with your pain.

    To make sure you get a better night’s sleep:
    Counselling or CBT can help to break the cycle of anxiety, depression and pain and has helped many people keep their pain under control – your GP will be able to refer you.

    Cognitive behavioural therapy (CBT) can be very effective for people who have severely disrupted sleep.

    Sleeping tablets are not normally recommended as tolerance and addiction problems are common.




    Fibromyalgia varies from person to person. Try some of the following tips to find out what works for you:

    Learn to take time out for yourself to relax your mind and your muscles.
    Practise simple changes in behaviour such as pushing through the pain until it stops you or trying to ignore the symptoms. Or listen to your body and be compassionate to yourself as you would towards someone you care for.




    What are the aims of this research?

    Maintaining Musculoskeletal Health (MAmMOTH) Study

    Award Details

    Principal Investigator
    Professor Gary Macfarlane
    Type of grant
    Clinical Studies
    Amount Awarded
    £850,438.97
    Institute
    University of Aberdeen

    The aim of this research project is to investigate the success of cognitive behaviour therapy by telephone in preventing the development of chronic widespread pain (CWP) in fibromyalgia patients and to assess its cost effectiveness.
     
    Last edited: Sep 16, 2018
  20. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    This is the sort of nonsensical statement that shows there is no real thought behind this sort of project. It is a bit like saying pain is a key symptoms so not having pain is an important part of the treatment. No, it was what the treatment is supposed to achieve. And the treatment seems to be telling people that they cold sleep if they just put their mind to it.

    Drivel, I fear.
     

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