1. Guest, the 'News in Brief' for the week beginning 1st March 2021 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

New draft NICE guidelines for chronic pain emphasises exercise, CBT and acupuncture over medication

Discussion in 'Health News and Research unrelated to ME/CFS' started by Esther12, Aug 3, 2020.

  1. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,959
    Likes Received:
    32,151
    http://www.pulsetoday.co.uk/news/gp...s-for-chronic-pain-says-nice/20041262.article

    I've not been impressed by the evidence that painkillers improve outcomes over the long-term for chronic pain, but I also think it's important that it's patients themselves who get to decide what is best for them.

    I've got some concern that NICE mainly seem to want treatments that cannot be assessed under blinded conditions.

    NICE documents here:

    https://www.nice.org.uk/guidance/indevelopment/gid-ng10069/consultation/html-content-2

    Guidance includes:

     
    Last edited: Aug 3, 2020
  2. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    5,745
    Likes Received:
    46,239
    Location:
    Canada
    Getting hard to see the purpose of this organization. This BPS fluff is completely unnecessary, what is the point of "acknowledging the importance" of something that is irrelevant to the patient? Especially when the substance of the recommendations does not even meet the reported intent of understanding the impact of pain. This is clearly written by people who have no experience of chronic pain and no understanding of its impact. But they tell themselves that they do so I guess that's all the same?

    More and more it seems that for any chronic health problems the only advice that is genuinely better than nothing is: don't. Don't get sick, don't hurt yourself, don't suffer from chronic health problems, don't have pain. If you do the very best advice to offer is: ¯\_(ツ)_/¯. Great success.
     
    Joel, sebaaa, ladycatlover and 13 others like this.
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    8,495
    Likes Received:
    90,034
    The whole thing lacks the necessary rigour. It seems that if 'evidence' is generally a bit positive they go with it, regardless of quality or likely bias.

    I think it seriously inappropriate that guidelines like this should recommend to someone, presumably a generalist prescriber such as a GP, to prescribe duloxetine. Drugs like duloxetine have very nasty side effects and should only be used by clinicians who have seen their use under supervisions and are formally trained in their use - and therefore have no need for guidelines of this sort.

    I can see the logic of guidelines that provide an assessment of evidence and ring fence certain treatments as considered reasonable to use. But that is a very different thing from guidelines that read like a recipe for someone without training. Fortunately, I suspect that the ME/CFS committee has a rather better understanding of these issues.
     
  4. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    5,745
    Likes Received:
    46,239
    Location:
    Canada
    sebaaa, ladycatlover, ukxmrv and 12 others like this.
  5. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    Messages:
    575
    Likes Received:
    3,829
    Location:
    UK
    Of course, the largest of many elephants in the room is perhaps cannabis, which barely gets a look in due to lack of evidence (read lack of studies).
     
  6. Trish

    Trish Moderator Staff Member

    Messages:
    30,807
    Likes Received:
    146,804
    Location:
    UK
    I certainly hope the ME/CFS one is better than this. But some of us may be affected by this pain one as well, as many of us have significant pain as part of our ME.
     
  7. alktipping

    alktipping Senior Member (Voting Rights)

    Messages:
    742
    Likes Received:
    3,966
    yet again nice has the sole purpose of saving the government money on healthcare spending why people confuse it with a body that operates on the best evidence is simply because of marketing .
     
  8. Hutan

    Hutan Moderator Staff Member

    Messages:
    12,423
    Likes Received:
    51,354
    Location:
    New Zealand
    Yes. Just now, I'm looking at an NZ guidance document for ME/CFS that has a link through to a Chronic Pain guidance. The former is now quite good, but the Chronic Pain guidance is full of the worst of BPS ideas including catastrophic thinking, childhood trauma and mood disorders as causes. We can polish up the ME/CFS guidance, but here people with ME/CFS are still being directed to clinics that operate under the current Chronic Pain paradigm. It feels like 'whack-a-mole'.

    It certainly is worth trying to influence this UK chronic pain guidance, not least because it will influence guidance elsewhere in the world.

    (Some minor edits to clarify)
     
    Last edited: Aug 3, 2020
  9. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    3,520
    Likes Received:
    19,427
    Location:
    UK
    Well, that's me stuffed then. I take Tramadol (an opioid) and Naproxen (an NSAID). They do help me a lot. Before I was prescribed them I was in agony. One of my problems is that I'm useless at describing pain and, based on the reactions I get from doctors to my very existence, I'm assumed to be a hypochondriac, a liar, and a drug seeker.

    I find it hard to believe that rich private patients will be sent to do CBT and told to exercise. And what about elderly people with chronic pain? Are they going to get their heads shrunk and be told to exercise too?
     
    Philipp, Michelle, sebaaa and 16 others like this.
  10. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    3,520
    Likes Received:
    19,427
    Location:
    UK
    From this link : http://www.pulsetoday.co.uk/news/gp...s-for-chronic-pain-says-nice/20041262.article

    The grey box at the end of the article ...

    So, torturing patients is now an official part of a doctor's job? I know they've done it a lot anyway, but it was never previously acknowledged.
     
  11. shak8

    shak8 Senior Member (Voting Rights)

    Messages:
    997
    Likes Received:
    5,624
    Location:
    California
    So this is medical propaganda, NICE.

    Or rather, not nice.

    Relief of part of someone's chronic pain is the most important intervention a doc can make. If a trial of various drugs, one by one or in combination are found to be effective, well then, the doctor has done their job.

    Sure, Purdue Pharma blanketed the greater USA with their oxycontin assasination pills. But please, NICE, don't confuse adequate treatment of pain with risk aversion.

    I have moderate to severe chronic pain due to fibro/autoimmune/possible ME. Without my daily low-dose cocktail (hard won trials of these drugs orchestrated by me researching the best clinicians) of a muscle relaxant plus low dose methadone daily, I could not cope.

    I would be suicidal, and no, CBT would not be effective for that either.

    ETA Acupuncture clearly escalated my pain level. I cannot take anti-depressants as they provoked a sub-mania (not fun and very long-lasting). Exercise can massively increase my pain to frightening levels. So, exercise is again, prescribed (by me, trial and error).

    Bottom line: pain care, like patient care, has to be individualized. No short-cuts, NICE. Hear the patient, have compassion. Do what works. Not these quasi-kiddie quack 'treatments.' Rant over.
     
    Last edited: Aug 4, 2020
  12. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    3,520
    Likes Received:
    19,427
    Location:
    UK
    This NICE guideline is going down like a ton of bricks on Twitter :

    Code:
    https://twitter.com/NICEComms/status/1290225903654576128
     
  13. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    3,520
    Likes Received:
    19,427
    Location:
    UK
    I haven't checked this arithmetic, but apparently if the number of pages in the new guideline and the supplementary pages are added together there are approx 2,700 pages to read. How many sick people are going to have the stamina to do that?
     
  14. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,959
    Likes Received:
    32,151
    Jo Daniels doesn't seem too concerned:

     
    sebaaa, ladycatlover, rvallee and 5 others like this.
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    8,495
    Likes Received:
    90,034
  16. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    1,487
    Likes Received:
    10,684
    Location:
    betwixt and between
    From The Guardian:
    The chairman of the guidance committee, Nick Kosky, said that, while patients expected a clear diagnosis and effective treatment, the complexity of the condition means GPs and specialists can find it very “challenging” to manage.

    The consultant psychiatrist at Dorset Healthcare NHS University foundation trust added: “This mismatch between patient expectations and treatment outcomes can affect the relationship between healthcare professionals and patients, a possible consequence of which is the prescribing of ineffective but harmful drugs.

    “This guideline, by fostering a clearer understanding of the evidence for the effectiveness of chronic pain treatments, will help to improve the confidence of healthcare professionals in their conversations with patients.

    “In doing so it will help them better manage both their own and their patients’ expectations.”

    That seems to be the gist of BPS-medicine as it is commonly practiced: improve the confidence of healthcare professionals in their conversations with patients.

    Edited to add, from the same article:

    “Importantly the draft guideline also acknowledges the need for further research across the range of possible treatment options, reflecting both the lack of evidence in this area and the need to provide further choice for people with the condition.”

    So BPS is about confidence without evidence.

    Edit 2:
    Thought my post needed clarification for potential readers new to the forum.

    “This guideline, by fostering a clearer understanding of the evidence for the effectiveness of chronic pain treatments, will help to improve the confidence of healthcare professionals in their conversations with patients."

    That would indeed be helpful if the first part of the sentence were true. However, a clearer understanding of the evidence would imply that not only the pharmacological treatments were critically assesses but also the non-pharmacological interventions. The latter rarely is done . Assessment of psychological and exercise interventions mostly rely on non-blinded trials with solely self-reported, subjective outcomes.

    In addition, adverse reactions in therapist-delivered treatment studies seem to be less rigorously investigated than in drug trials. And for adverse reactions or harm occurring in psychological and exercise therapies offered by the NHS there is no system to report them.

    So it could be true that there is no or not sufficient evidence for the benefits of certain painkillers for reducing unexplained long-term pain conditions when balanced against the harms. At the same time, the conclusion to instead prescribe behavioral interventions is very probable not based on solid evidence, but on the idea that doctors can't be left with the situation that they cannot offer any treatment.

    Of course, it's not easy to tell patients that there currently is no effective treatment that could help them. But as has been said on this forum repeatedly, it is better to be told that there is no effective treatment than to be offered false hope an ineffective, potential harmful and costly treatments.

    A common sense BPS approach would mean that patients at least would be offered practical support.

    And maybe, there is also a more sensible and elaborated scheme how painkillers could help not as a cure, but to occasionally have pain relief in short periods that enable people to pursue activities that otherwise they couldn't pursue at all.
     
    Last edited: Aug 4, 2020
    Arnie Pye, Philipp, Michelle and 15 others like this.
  17. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    3,307
    Likes Received:
    22,919
    Is this not an example of "abnormal illness behaviour". It is just that it is the doctors who suffer it.

    Obviously there are difficulties faced by both sides. The problems faced by doctors in these circumstances clearly need to be examined without "circling the wagons".
     
  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    8,495
    Likes Received:
    90,034
    Indeed. Pretending to be a doctor rather than pretending to be a patient.

    I have not actually heard of 'Primary Pain' before. The next in a long line of weaselisms?
     
    Arnie Pye, Hutan, Michelle and 17 others like this.
  19. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,286
    Likes Received:
    16,522
    It looks like the neuropathic pain guideline is still in place? Ideally, pwME should try to get pain treated under that older guidance for the time being.

    As such, I would suggest that pwME refer to their pain as burning and searing whenever they visit the doctor so that it is treated as neuropathic instead of 'chronic primary' pain.

    We shouldn't have to, but unless there's a full 180 on this, many people might lose their medications.
     
    Arnie Pye, Michelle, sebaaa and 9 others like this.
  20. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    8,495
    Likes Received:
    90,034
    It seems that Primary Pain arrives on the map with ICD-11. The blurb says.

    Chronic primary pain is a novel concept originating in the insight that diseases or long-term conditions associated with chronic pain should be acknowledged in their own right, even if a clear understanding of the underlying etiology or pathophysiology is missing. It marks a deliberate move away from the practice of labeling unexplained pain as somatic symptom disorder. A diagnosis of somatic symptom disorder implies that the pain is caused by a behavioral, that is, mental condition. However, it is not appropriate to diagnose individuals with a mental disorder solely because an alternative medical cause cannot be established.

    Déja déjà vu or what?

    Isn't there a contradiction here. There is an 'insight' that a disease must be recognised even when there is no disease recognised. What is the long term condition associated with chronic pain if it is not the chronic pain? And if you have no idea what it is why give it a name?

    And so on.
     
    Arnie Pye, Michelle, sebaaa and 20 others like this.

Share This Page