The Call for Opposition: Challenging the P2P and IOM Processes
In our second article on how to react to the publication of the draft P2P report, Gabby Klein provides her view of why she and a large group of advocates and patients are continuing their protest of the government’s ongoing control and manipulation of our disease via their processes...
Discuss the article on the Forums.

Is CDC Out to Bury PEM?

Discussion in 'Action Alerts and Advocacy' started by Mindy Kitei, Jul 8, 2014.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    4,823
    Likes:
    5,919
    Cornwall, UK
    Could well be - or just prolonged over-exertion instead of resting after an active day. I crashed for a week once after doing that, but was fortunate to recover to 'my normal'.

    Similar things happened again after prolonged over-exertion. It was always unavoidable exertion, e.g. scavenging firewood trying to keep warm, having to move things for builders and clean up their mess afterwards, and caring for a terminally-ill cat. I ended up very ill twice, taking at least 2 years after the last serious exacerbation to get back to 'my normal', I think. But it wasn't until after the second serious illness (which led to 4 days in hospital) that I realised what was causing it! (and of course no doctors did :(). I had to work out and action the remedies without their help.
     
    rosie26 and taniaaust1 like this.
  2. caledonia

    caledonia

    Messages:
    3,122
    Likes:
    1,836
    Cincinnati, OH, USA
    What Keela Too is saying - you monitor someone for a long time, say for a month. You should be able to see patterns of overdoing and crashing and an overall low activity level, high heart rates with very little activity and so forth. If someone doesn't have ME, they should have different results.

    I would love to see some sort of study done on this to prove or disprove the efficacy of this tool.
     
    WillowJ and Nielk like this.
  3. anciendaze

    anciendaze Senior Member

    Messages:
    979
    Likes:
    1,369
    Could someone who has already looked into FitBit tell me how hard it would be to use it to measure HR recovery times? It seems you would need some other means of knowing when perceived exertion ended and recovery time began.
     
  4. Bob

    Bob

    Messages:
    9,515
    Likes:
    15,101
    South of England
    Unger's latest thinking is outlined in one of the 2014 Stanford symposium videos:
    http://mecfs.stanford.edu/2014SymposiumVideo.html
    (See Video 1)


    I think some of her presentation is very disappointing (e.g. it suggests very little progress in terms of her scientific understanding of ME/CFS), but it's not all bad (e.g. she emphasises the heterogeneity of ME/CFS and the need for science to focus on subsets.) (Shame the CDC didn't work that out 50 years ago.)

    She doesn't say a great deal about post-exertional malaise but she does say that it's experienced or 'endorsed' by roughly 80% (i think) of patients in the cohorts she's been looking at. (I don't know how they measured PEM in these cohorts, but it doesn't seem to have been an impassable objective!)

    Also, Unger endorses the FDA's 'The Voice of the Patient' report, and she acknowledges that ME/CFS patients rarely 'recover' back to previous levels of functioning. (So, in effect, perhaps, rebutting the claims from the UK psychiatric lobby that CBT/GET are curative.)
     
    Valentijn likes this.
  5. Ruthie24

    Ruthie24 Senior Member

    Messages:
    161
    Likes:
    296
    New Mexico, USA
    @Keela Too- How are you getting your Fitbit account to show you the difference in times between your activity levels? Is that part of the premium package? I see on the daily report where my steps are recorded in different colors on the graph but it doesn't give a summary of how many or how long the time is for each stage.

    @Scarecrow - I'm not sure that the Fitbit would help with measuring HR Recovery times. It doesn't monitor HR. It's a wrist pedometer basically which also measures sleep. I use both the Fitbit and a HR monitor to help with my pacing and I still fail at it. I appreciated your info on HR recovery times. Gives me something else to add into the equation.
     
  6. Keela Too

    Keela Too Senior Member

    Messages:
    280
    Likes:
    626
    N.Ireland
    Fitbit doesn't measure HR - or at least mine doesn't. I have a separate HR monitor. The one I use now is an armband it's a Rhythm+. It has no readouts itself but I use the Endomondo app on my phone to get the figures - which are then visible on line and graphed etc.
     
  7. Keela Too

    Keela Too Senior Member

    Messages:
    280
    Likes:
    626
    N.Ireland
    When I go into my profile there is a graph of the last month with 3 lines on it Blue, yellow and red for the 3 activity levels. Hovering over that graph gives me the actual numbers. I have a Fitbit One but don't have the premium membership...

    The graph looks like this: [​IMG]
     
    MeSci, taniaaust1 and Ruthie24 like this.
  8. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,824
    Likes:
    5,283
    USA
    @anciendaze I wanted to add two thoughts:

    1) If someone like me with previously severe tachycardia is now taking beta blocker and Florinef, then the results would not be equal to without those meds.

    2) Also someone like me could have very high HR for a few minutes but if I lie down it can stabilize quickly on a monitor yet it takes me hours or even days to recover. I get shortness of breath, fatigue, numbness in my hands and other symptoms that the objective HR data could miss but occur after each episode of tachycardia.
     
    taniaaust1, WillowJ and Ruthie24 like this.
  9. Ruthie24

    Ruthie24 Senior Member

    Messages:
    161
    Likes:
    296
    New Mexico, USA
    @Keela Too - HA! Brilliant!! Thanks bunches!! Think I maybe saw that once before but didn't remember it or register how helpful it would be. You rock!
     
    Keela Too likes this.
  10. Keela Too

    Keela Too Senior Member

    Messages:
    280
    Likes:
    626
    N.Ireland
    Just thinking here. You could start an activity, and as you do start your HR monitor and the Fitbit timer.

    Then you could look at the two graphs produced together to work out what is going on.

    Presumably you could devise a standard "test" - say walk a certain distance - to do for yourself to quantify your current state.

    Alternatively perhaps it could be used to create a known HR for a set period. Eg work at 100bpm for X minutes and then track recovery. Looking at the exertion levels that can be achieved with a HR of 100bpm would be interesting. Some days I can walk to the bath room and never hit 100, other days the same walk takes me much higher (and when I had a virus it was up to 150!)

    So there would be a load of potential I think.
     
  11. Scarecrow

    Scarecrow Senior Member

    Messages:
    446
    Likes:
    1,003
    Scotland
    Hi @Ruthie24, you tagged me in error I think. Could it have been @anciendaze you were looking for?
     
    Ruthie24 likes this.
  12. anciendaze

    anciendaze Senior Member

    Messages:
    979
    Likes:
    1,369
    I'm going to have to read more about FitBit. I agree that Ruthie24 seems to have tagged Scarecrow by mistake.

    @Gingergrrl43

    There is obviously far more that one dimension to PEM, but I believe you would find that during a period of PEM you would find HR going up rapidly with modest exertion while recovering more slowly than outside a PEM episode. Those laboratory measurements in a CPET would show a lower threshold for entering anaerobic metabolism. The feeling you describe is the malaise which caused the name to be applied.

    I'm somewhat at a loss to understand how FitBit can measure activity levels in a useful way since the effort to simply stand up causes my HR to shoot way up with almost no other movement. Any day when I can stand up without going over 100 bpm has to be considered good. Taking a shower is almost certain to provoke a larger HR excursion which requires me to lie down to recover. The risk of slipping and falling while showering, with my bp bouncing around, has caused me to revert to sit-down baths.

    If I were less severely impaired I could see the value, but I can already tell people that 4 hours upright is a whole day for me.
     
    SOC, Ruthie24 and Valentijn like this.
  13. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,824
    Likes:
    5,283
    USA
    @anciendaze I wanted to clarify my earlier post b/c you and I are definitely on the same page re: finding a way to measure PEM for people like us who are too ill to do CPET testing.

    My thoughts re: HR were that for me, even if I was wearing a fitbit monitor (which I don't have) or any monitor to register HR in an effort to demonstrate PEM, I'm not sure that my data would be as accurate b/c I am taking a beta blocker and Florinef. Back in Jan 2013 (which started this portion of my odyssey) my HR on several occasions went as high as 177 BPM completely unprovoked. With the beta blocker this does not occur, or even close to it (Thank God!)

    Also, when I had the episodes of high tachycardia (for me anything over 140 BPM unprovoked), I could lie down and my HR could stabilize within minutes (during PEM or non-PEM) so that measurement would seem like it cleared (which is where my cardiologist gets stuck) but for me, the residual effects of confusion, fatigue, shortness of breath, etc, can last for hours or days (but the HR monitor would appear that the episode had resolved.)

    I used to take the beta blocker as a prn (as needed) medication or take it after an episode of tachycardia but now I take it early every morning before I have the episode and it has made an incredible difference. I take a very low dose like I said and am glad I made this switch (my own idea, not cardiologists!)

    I also wanted to ask you if you take a beta blocker and if you use a shower chair? I absolutely can no longer stand in the shower and it is the hardest of all tasks for me. The shower chair was a lifesaver and for a while I was too ill to use it and had to take baths but now I am able to use the chair again. Do you have IST, POTS, or another heart diagnosis? (if you are comfortable sharing of course.)
     
  14. Mary

    Mary Senior Member

    Messages:
    390
    Likes:
    336
    This is very well put:
    "Just because it is not easy to objectively test for a specific symptom doesn't mean itt should not be required for a diagnosis of the disease."

    PEM is the hallmark of CFS and the 2-day exercise stress test is one method of measuring it. As many have said, it has one very serious flaw in that many of us would become much sicker from the test itself - but - just for information purposes, it shows incredible abnormalities which are not present in any other illness, including MS.

    So to attempt to diagnose CFS without PEM is meaningless, as pointed out by Neilk. If the CDC had been busy trying to find out about CFS and PEM, we might have simple diagnostic tools by now. It is beyond ironic that Dr. Unger wants to dismiss PEM as an element of diagnosis - she wants to make diagnosis simpler - diagnosis of what exactly? Without PEM, you have a zillion conditions which cause fatigue etc., none of which are CFS.
     
    Anne, ahimsa, taniaaust1 and 5 others like this.
  15. Sean

    Sean Senior Member

    Messages:
    1,533
    Likes:
    3,428
    Have not read every post so apologies if repeating stuff.

    The whole direct health status monitoring technology thing is about to get integrated and mainstream, via several companies, and I have no doubt that quite soon easily wearable and quite cheap units will be able to (more-or-less) continuously and non-invasively measure important functions/variables like, general activity level, heart rate, breathing rate, temperature, blood oxygen & glucose, etc, etc, etc.

    We are very close to the point where patients can start building their own good quality database of this important objective data, and make it available to the public. We have the advantage of both numbers and motivation. Main issue for us is setting it up, both the amount of work involved, and making it methodologically rigorous so researchers can rely on it. Once it is up and running it should be a relatively minor effort to maintain, and I don't believe the amount of funding required will be large, especially if patients are buying their own units.

    This is something we can do for ourselves. Maybe with some technical advice from research physiologists, stats people, etc.
     
    Last edited: Jul 11, 2014
    caledonia, MeSci, Bob and 6 others like this.
  16. taniaaust1

    taniaaust1

    Messages:
    8,886
    Likes:
    5,922
    Sth Australia
    Thanks for reminding people that her views on this have been there now for a long time, I cant see her ever going to change these (she would of done so well before now otherwise).
     
  17. taniaaust1

    taniaaust1

    Messages:
    8,886
    Likes:
    5,922
    Sth Australia
    I think I could use something like that to measure my PEM some, not sure thou about my POTS stuff thou which is more complex.
     
  18. Firestormm

    Firestormm Guest

    Messages:
    5,823
    Likes:
    5,983
    Cornwall England
    I actually agree with Beth Unger.

    I thought the last blog with Ian Lipkin was great, but this was far less so I am afraid.

    And this is especially distasteful and should be I think to everyone:

    How the heck can anyone know that for heaven's sake?! Jees. One step forward and two steps back.

    I know you are all 'in to' this testing method with your bikes and all - but PEM was always more than just over-exerting due to 'exercise'. So how to test for that? How to test for cognitive over-exertion leading to increased symptoms 'flares'?

    These exercise tests... Oh I can see it now. Every doctor's surgery up and down the land having an area for exercise machines and monitoring. Can't reach the limits? Don't have the disease. Sorry. Come back when you feel worse.

    When will the test be done? At the point of diagnosis? What about a week later or two weeks? What of constant monitoring? Are you implying that without more research this bike-test-thing become THE objective measure for ME?

    Last week you were all banging on about scans... next week it will be something else...

    Each time I visit my doctor, I can only consider the fear I might experience, as she places me on the bike to determine if I qualify for disability benefit...

    ATOS would have a field-day. Even the sevrely affected forced onto a bike to 'measure' their ME... Oh yeah. Dr Ramsay would turn in his grave.

    No. Far more work is needed to demonstrate this 'test' of anything is relevant to the disease and more work is needed thereafter to determine how - outside of research - it might feature in clinic.

    Some are using it - Nancy Klimas was in her video I recall - to help patients better monitor their health and engage in exercise. Well I remember the criticisms THAT approach received.
     
  19. Valentijn

    Valentijn Activity Level: 3

    Messages:
    7,257
    Likes:
    11,798
    Amersfoort, Netherlands
    @Firestormm - I think you missed out on a lot of the conversation, and have failed to pick up on the difference between PEM being a diagnostic requirement, and the 2-day CPET being required for diagnosis.

    No one is suggesting the 2-day CPET be used for diagnosis. But PEM is an extremely important symptom of ME, and that symptom should be required to fulfill the criteria for an ME diagnosis. This can be done via asking the patient if they have PEM, just as it is done now under the CCC and ICC, and just as it is done with "fatigue" under Oxford and CDC definitions.
     
    taniaaust1, NK17 and Nielk like this.
  20. Keela Too

    Keela Too Senior Member

    Messages:
    280
    Likes:
    626
    N.Ireland
    I tend to agree that the 2 day test should NOT be advocated as a compulsory test for ME.

    I would be very cautious about taking it. I suspect from my track record I would never recover. I certainly wouldn't risk a long term down turn just to get numbers.

    HOWEVER - the post exertional effects are vitally important to ME, and I think are central to its diagnosis. Those who are not damaged by exercise, perhaps need a different sort of treatment to those who ARE damaged by exercise.

    Perhaps there will be easier ways to determine PEM - certainly using my Fitbit and a HR monitor I think I can demonstrate days where PEM is in action.
     
    MeSci likes this.

See more popular forum discussions.

Share This Page