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ME/CFS: An evidence based approach to diagnosis and management

Discussion in 'Latest ME/CFS Research' started by charles shepherd, Nov 28, 2015.

  1. charles shepherd

    charles shepherd Senior Member

    Some good support for pacing with strategic rest periods in this management review of ME/CFS:

    Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians.

    Rev Environ Health. 2015 Dec 1;30(4):223-249. doi: 10.1515/reveh-2015-0026.
    Bested AC, Marshall LM.


    This review was written from the viewpoint of the treating clinician to educate health care professionals and the public about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

    It includes: the clinical definition of ME/CFS with emphasis on how to diagnose ME/CFS; the etiology, pathophysiology, management approach, long-term prognosis and economic cost of ME/CFS.

    After reading this review, you will be better able to diagnose and treat your patients with ME/CFS using the tools and information provided.

    Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, chronic medical condition characterized by symptom clusters that include: pathological fatigue and malaise that is worse after exertion, cognitive dysfunction, immune dysfunction, unrefreshing sleep, pain, autonomic dysfunction, neuroendocrine and immune symptoms.

    ME/CFS is common, often severely disabling and costly. The Institute of Medicine (IOM) reviewed the ME/CFS literature and estimates that between 836,000 and 2.5 million Americans have ME/CFS at a cost of between 17 and 24 billion dollars annually in the US.

    The IOM suggested a new name for ME/CFS and called it Systemic Exertion Intolerance Disease (SEID). SEID's diagnostic criteria are less specific and do not exclude psychiatric disorders in the criteria.

    The 2010 Canadian Community Health Survey discovered that 29% of patients with ME/CFS had unmet health care needs and 20% had food insecurity - lack of access to sufficient healthy foods. ME/CFS can be severely disabling and cause patients to be bedridden.

    Yet most patients (80%) struggle to get a diagnosis because doctors have not been taught how to diagnose or treat ME/CFS in medical schools or in their post-graduate educational training. Consequently, the patients with ME/CFS suffer.

    They are not diagnosed with ME/CFS and are not treated accordingly. Instead of compassionate care from their doctors, they are often ridiculed by the very people from whom they seek help.

    The precise etiology of ME/CFS remains unknown, but recent advances and research discoveries are beginning to shed light on the enigma of this disease including the following contributors: infectious, genetic, immune, cognitive including sleep, metabolic and biochemical abnormalities.

    Management of patients with ME/CFS is supportive symptomatic treatment with a patient centered care approach that begins with the symptoms that are most troublesome for the patient.

    Pacing of activities with strategic rest periods is, in our opinion, the most important coping strategy patients can learn to better manage their illness and stop their post-exertional fatigue and malaise. Pacing allows patients to regain the ability to plan activities and begin to make slow incremental improvements in functionality.

    Pubmed ref: http://www.ncbi.nlm.nih.gov/pubmed/26613325
    barbc56, Countrygirl, MEMum and 6 others like this.
  2. shannah

    shannah Senior Member

    "Pacing allows patients to regain the ability to plan activities and begin to make slow incremental improvements in functionality."

    Until what? We're all well again?

    Really - is this the best we've got? Am I missing something here?

    Honestly - it's December 2015! Does anyone other than me think this is a major overstatement? Or that maybe this might not apply to all subsets of people with ME especially those that appear to fall into the category of 'progressive' ?

    It's so discouraging to see this kind of energy wasted on same old same old after the events of this year.
    Chezboo, Sidereal, Woolie and 6 others like this.
  3. CantThink

    CantThink Senior Member

    England, UK
    I know what you mean @shannah

    It's the slow incremental improvements part that doesn't make sense to me. It suggests consistent improvements and a general upward trend.

    I don't know about anyone else, but that's not how it works for me. I pace to be able to attend a hospital appointment/test or to get necessary things done such as personal self care/food & eating/tasks in the house. There's finite energy available, and pacing for me is about how I use it.... Like budgeting how to spend money.

    I guess what I'm trying to say, is that for some of us pacing is not about improvement... It's about trying not to worsen!
    perrier, ahimsa, Sidereal and 21 others like this.
  4. Aurator

    Aurator Senior Member

    Yes, and more fundamentally it suggests an underlying belief that the illness is something that a patient can recover from simply by managing his or her activity level appropriately.

    As with the theory behind GET, there can only be one of two implicit assumptions here: either the patient is not suffering from an organic disease, or organic diseases can be cured by nothing other than managing one's activity level. Neither assumption merits the applause of PwME.
    What they say elsewhere in the abstract about recent advances and discoveries does not sit well with this final part.
    Sidereal, Woolie, barbc56 and 5 others like this.
  5. shannah

    shannah Senior Member

    I'm sure there's many in this position @CantThink

    Perhaps we can alert Ron Davis for Whitney with this new paper! Or Linda over in Britain! Or countless others laying in bed - including myself!

    Pacing may be a helpful technique AT TIMES but it certainly shouldn't be presented as a paper or posing as if it's some sort of bona fide research. As of this year, this kind of drivel is absolutely no longer acceptable. The people regurgitating this stuff under the guise of being enlightening or helpful need to know that we no longer accept scraps of uselessness and they need to start producing something meaningful.
    Sidereal, Woolie and helen1 like this.
  6. charles shepherd

    charles shepherd Senior Member

    As I've already commented, I believe it is a welcome development to find that pacing is being recommended in a published review aimed at doctors as being the most appropriate and effective form of activity management for ME/CFS and not GET.

    We only have an abstract to look at for now - so we have no idea about what is being said in relation to more detailed guidance on pacing

    Pacing has its limitations but it does help a significant proportion people to cope with their ME/CFS - as I know from both clinical and personal experience

    And as we point out in the MEA report on the acceptability, efficacy and safety of CBT, GET and Pacing:

    'Pacing was consistently shown to be the most effective, safe, acceptable and preferred form of activity management for people with ME/CFS and should therefore be a key component of any illness management programme.

    The benefit of Pacing may relate to helping people cope and adapt to their illness rather than contributing to a significant improvement in functional status. Learning coping strategies can help make courses more appropriate to needs even if they do not lead to immediate or even longer term improvement in symptoms'.

    From the MEA report:

    Woolie, barbc56, Bob and 4 others like this.
  7. jimells

    jimells Senior Member

    northern Maine
    Yes, this is the best we've got at the moment, and believe it or not, this abstract is a huge improvement over the psychobabble of the past 30 years. In fact, I was reading this and thinking how much I wish I had brought this one brief abstract to my first appointment with my new primacy care provider, who believes my illness is "primarily psychological", and seems to buy into the fraudulent idea that treating symptoms somehow magically perpetuates the illness.

    It's also important to remember that 75% of the patient population is *not* severe, and this paper could help them, and some patients do actually improve over time, folks such as our own @charles shepherd

    I readily agree the abstract doesn't offer much for us severe patients beyond helping to legitimize the idea that we have a real biomedical illness, which of course is obvious to us, and to physicians willing to use their head for something besides a hat rack.
    JaimeS, JayS, ahimsa and 9 others like this.
  8. shannah

    shannah Senior Member

    No disrespect meant to you @charles shepherd

    Your opinion is very much valued and I do understand your points.

    I just have great difficulty with that last line - as is obvious! It seems to imply something that it just cannot deliver for some.

    After this years events ... I'm expecting GREAT things to come from the research community. The last time we had such hope was October 2009 and we all know how that ended up and how many in our community have died since then while still hoping.

    After being severely ill for so long ... I have tunnel vision and I'm looking for major advancements forward not statements that seem to do the reverse. I apologize if I over reacted.

    In truth, I'm always scanning for that word TREATMENT.
    CantThink, Woolie, MeSci and 5 others like this.
  9. Gijs

    Gijs Senior Member

    These authors suggest that ME/CFS is a treatable or controllable disease. This is absolutely not the case. Pacing is a sort of lifestyle management.
    perrier, CantThink, Sidereal and 4 others like this.
  10. worldbackwards

    worldbackwards Senior Member

  11. TiredSam

    TiredSam The wise nematode hibernates

    I'd agree that it's very encouraging to see pacing recommended, for me it's the main way of coping with ME and makes the difference between being funtional and non-functional, and is how I recover from setbacks and crashes/mini-crashes. I'm sure if I hadn't learnt to pace quite early on my decline would be much faster and more severe.

    However, it's a shame that it seems from the abstract that the authors don't understand that there is zero training effect. Pacing just allows me to maximise my functionality at the stage of ME that I'm at. It doesn't lead to any improvement in the severity of my ME at all.

    On balance I think it's good to see pacing given such prominence though. The authors just need to do a bit more homework, they're going in the right direction and they're nearly there, and it's so much better than what we usually have to read.
    CantThink, ahimsa, Sidereal and 5 others like this.
  12. Bob


    England (south coast)
    We're all different and I hear people who say that nothing controls their symptoms. It must be very frustrating to be told that managing your activity levels will lead to an improvement when it does nothing of the sort. But pacing has always been very helpful for me. (And I'm talking about the old style pacing, not the "pacing-up" style which is GET by another name, whereby GET practitioners have appropriated the name for their own corrupt purposes.)

    When I first discovered pacing it helped stabilise my symptoms for the first time since becoming ill (because I learned to avoid crashing - my symptoms have always been extremely reactive to exertion) and then it allowed for a very gradual improvement over a period of years. Perhaps this improvement would have happened anyway, but I don't think it would have done if I hadn't been avoiding crashes and relapses (albeit with nasty accidents along the way), managing activity, and resting intensely whenever possible.

    My illness took a sudden and nasty turn for the worst a year ago and I'm in an acute stage again, but resting definitely helps me avoid wild fluctuations and persistent drastic deterioration.

    But of course it doesn't work for everyone, and it's not a treatment or a cure.
    ahimsa, Sidereal, Woolie and 11 others like this.
  13. Kati

    Kati Patient in training


    Look, pacing is still a behavioral therapy. Patients are still sick. Most are still too sick to return to work. Some in this forum are pacing so they can 'afford' one or 2 outing per year. And then if we do not improved from pacing we are told it is our own fault.

    We deserve more than behavioral therapy and symptom management.

    Take sleep difficulty. We will be told we should not use the bed other than for sleep or for sex. That we should not be using an electronic device before sleep time.etc etc etc. Sleep hygiene is still behavioral. Does it change anything to our sleep patterns? No!

    I am so fed up with it all. The longer that self-management and behavioral therapies is promoted, the more it gives permission to our government to pursue behavioral research into this disease. Enough is enough.

    The same author published a cookbook for crying out loud. To recover and heal 'the natural way'.

    Last edited: Nov 28, 2015
    perrier, CantThink, ahimsa and 6 others like this.
  14. Kati

    Kati Patient in training

    No this is not the best we got at the moment. People improve with immune modulators and antivirals. The Norwegian team, Dr Lerner and Montoya/Kogelnik have shown this. Then there is Ampligen.
    ahimsa, Chezboo, helen1 and 3 others like this.
  15. Kati

    Kati Patient in training

    Sorry for 3rd post in a row.

    Quoting Carolyn Wilshire who responded to one of the PACE article on BMJ:

    (Bolding mine, text aired out for easier reading)
    JaimeS, Chezboo, Sidereal and 8 others like this.
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Cornwall, UK
    Like others, I am happy with this review/guidance apart from the last line. It is indeed a great improvement from the dreadful 'training videos' produced by Gerada, Chalder et al. and the immediate look of scepticism we get from the doc as soon as they realise that we are 'those people' - the patients they can't treat, who keep coming back, who won't get better...

    But if doctors are led to believe that pacing will bring about recovery, we are still likely to suffer the blame for not getting better, this time for not pacing properly!
    CantThink, JaimeS, ahimsa and 8 others like this.
  17. Jenny

    Jenny Senior Member

    In my 34 years of ME this has absolutely not been the case.
    perrier, CantThink, ahimsa and 6 others like this.
  18. Kati

    Kati Patient in training

    The author of the paper would tell you that you've been doing it wrong.
    perrier, CantThink, ahimsa and 4 others like this.
  19. SOC

    SOC Senior Member

    I'm a big fan of pacing. I think it can (not will, no guarantees) reduce the downward slide. I think it can make other treatments more effective because you are not continually damaging your body while the treatment is trying to work. I think it can, in some circumstances, make it easier to manage life by reducing the roller-coastering so you can arrange a predictable, although very limited, lifestyle.

    None of that treats ME or improves our medical condition. At best it might shift our lives from chaos to a type of order and thereby alter our functionality to a small degree. As a treatment offering, it's pathetic. It's like handing a starving person a glass of water. Yes, it's a positive thing. Yes, it might be useful. But it's really nothing in terms of addressing the very real, very serious problem. It might keep the starving person alive just a bit longer, but it doesn't change anything about the fact that they're starving.

    If we compare the offer of pacing to being verbally abused and sent to CBT and GET, it is indeed an improvement. A glass of water is better than a kick in the head. It's a step in the right direction. But I have a hard time getting all gushy grateful for something this small. It feels like Stockholm Syndrome. "Oh thank you so much! You're so kind and generous for not kicking me in the head! I'll be forever grateful for your goodness!"

    It's likely that in some environments this small step has to be taken. The situation in those environments is so bad that we do need to encourage physicians who are trying to move from abuse to reducing harm. But in my mind, that's a political position on our part, not a personal or medical one. I can be glad for and encourage the movement in the right direction without feeling thrilled about the treatment offering or willing to accept it as 'treatment' at all.
    JaimeS, ahimsa, jimells and 12 others like this.
  20. barbc56

    barbc56 Senior Member

    I don't see this as completely negative. Management of symptoms is not the same as cure. Being able to function is as someone said above, like budgeting. You only have a certain amount of money to use and you want to use it as effectively as possible.. It doesn't mean budgeting will increase your income.

    Unfortunately, the reality is that some will still interpret this as cure.

    A step in the right direction which is positive but it's baby steps and that's frustrating.


    ETA After reading this again, I'm confused. Are the authors saying this is the only treatment or one component of symptom management and expanding on that? There's a big difference as far as what each implies.

    I wish we had the full paper.
    Last edited: Nov 28, 2015
    jimells, Woolie and Aurator like this.

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