1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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. Bob

    Bob

    Messages:
    8,805
    Likes:
    12,151
    South of England
    I totally agree with you. I suppose I was trying to explore the reasons why the CDC don't yet see PEM as being of primary importance in a clinical setting. If we understand their point of view, then we can better refine our arguments when we present evidence to them and other service providers.

    As I said in my previous post, the UK NICE guidelines do require PEM for a CFS/ME diagnosis (although I think the wording is ambiguous) and, as everyone knows, CBT & GET are the only treatments recommended by NICE for CFS/ME. So the requirement of PEM in the NICE guidelines has made zero difference for us. If we're extremely 'lucky' in the UK, we might be offered graded activity programs or counselling instead of CBT/GET.

    So, our experiences in standard clinical settings are influenced very little by the diagnostic criteria used, and I think this will continue to be the case until we have biomarkers or biomedical treatments.

    That's not to say that we shouldn't advocate for change. I'm just pointing out what little difference some changes might make in practical terms in the average general practitioner setting.

    The CBT/GET lobby in the UK argue that CBT/GET are appropriate interventions for CFS/ME patients with PEM, because (they claim) the therapies help to remove the boom and bust cycle that CFS/ME patients experience, etc etc. The PACE trial, they claim, is proof of safety.
     
    Last edited: Jul 12, 2014
    Scarecrow, MeSci and Valentijn like this.
  2. Bob

    Bob

    Messages:
    8,805
    Likes:
    12,151
    South of England
    Yes, I agree. The specific type of cognitive test is crucial. We do have evidence that demonstrates which cognitive tests show abnormalities in ME/CFS patients, as has been discussed on the forum. (We should write to Unger about the details.)
     
    MeSci likes this.
  3. Bob

    Bob

    Messages:
    8,805
    Likes:
    12,151
    South of England
    That's exactly what I get. My mental exertion seems to be slightly contained, in that it won't provoke a full-bodied relapse, but it only provokes a temporary brain-shut-down. Whereas physical exertion can provoke a total relapse.

    HIP raises an interesting discussion re mental exertion vs physical exertion. Also, some of us have more pronounced cognitive symptoms than others, while some of us have mainly physical symptoms. (I've got a good mix of both.)
     
    Scarecrow and Valentijn like this.
  4. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,193
    Sth Australia
    On the subject of the differences of mental exertion symptoms to physical I get those ones too for that, but another symtom I get for mental exertion is blurred vision. (I can also get that for physical but in that case its usually due to getting an attack of POTS). Mental exertion for me also causes memory issues as badly as my POTS does .
     
    Mij and Valentijn like this.
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,822
    Likes:
    4,586
    Cornwall, UK
    I certainly think that the interleukins are involved in PEM.

    It has occurred to me that it may be of significance that many people feel that their PEM is like a bad hangover - I certainly do. Hangovers are widely considered to be due to dehydration and electrolyte deficiency. Sound familiar?

    I have been looking into how exertion-induced mineral and fluid loss might be prevented in my blogposts here and here.
     
    Hip and Scarecrow like this.
  6. Mij

    Mij Senior Member

    Messages:
    703
    Likes:
    764
    I'm curious if anyone here gets calf soreness/fatigue and gait/equilibrim problems after reading or concentrating too much. I feel like I've climbed a mountain after doing my income taxes.
     
  7. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,982
    Cornwall England
    I certainly suffer 'PEM' after trying to work on my disability renewal even pacing myself. It's what I was saying before: PEM is for me at least more than physical exertion and it's aftereffects - it's mental exertion too: having the effect of symptom exacerbation.

    I think we would probably chose different words to describe these feelings - though perhaps would broadly agree that the aftereffects are not 'new' symptoms but a 'flaring' of existing symptoms.

    Any form of study or extended period of 'thinking' and trying to think then write cogent answers or calculate sums... totally floors me now. Especially frustrating is the lack of being able to express what I have in my head. Not being able to get in out into words or onto paper.

    Interesting - for me at least - to hear Komaroff (Video 5 from Stanford), tell of how one of these standard tests they use, gets you to count back from 100, subtracting 7 each time. He said even with one of his patient who was a Professor of Mathematics before his ME, cannot calculate to sums when he moves from e.g. 93 to 86, or 86 to 77 etc. Apparently it's a well known test - not that I was familiar with it (I must check it out): but it exemplifies my issue in part.

    I am the same with studying and trying to understand and then interpret or summarise text especially text of an 'academic' or even mildly complex nature. I went to university and before then college as a mature student (I was around 35 years old) with ME. And needed the help of a student 'buddy' (in my case a Phd student), to help get my thoughts from head to paper cogently.

    But the effect of 'writing' an essay would floor me the next day... in much the same way as walking too far or overexerting physically does. It's manageable - though you need to reduce what you try and do - but it means everything is much slower to complete and completing something as well or as accurately as once was possible: sometimes/most of the time is impossible without much help and support.

    So for me: this is the worst part of ME.

    Sorry. I ramble :)
     
    MeSci, Bob and Mij like this.
  8. Mij

    Mij Senior Member

    Messages:
    703
    Likes:
    764
    @Firestorm How about putting us on the bike on day two counting backwards?:eek: I would fall off.

    I can't walk and talk on a cell phone when I'm out so I no longer use one. I get woozy.
     
    Firestormm likes this.
  9. anciendaze

    anciendaze Senior Member

    Messages:
    898
    Likes:
    1,033
    There is another angle which might be susceptible to laboratory tests. This ties in with Jason's recent results about very low levels of BDNF in ME/CFS patients. Levels of BDNF are strongly affected by exercise. This also ties in with cognitive function.

    While wholesale prescription of exercise as "good for what ails you" is always a concern, there is an opening here for biochemical tests which would not require expensive MRS equipment only available at special medical centers. If, as we seem to experience, BDNF drops in response to what others consider a modest exercise challenge this would constitute a clear marker distinguishing ME/CFS patients from those who benefit from exercise. It would have the advantage of being correlated with parallel research on fatigue and cognitive function in MS patients.

    No politician or bureaucrat in their right mind is going to attack millions of MS patients as malingerers when thousands of excess deaths are now attributed to that disease. Nor or they likely to dismiss effects of BDNF in those recovering from traumatic brain injuries as mere placebo effect.

    Added: there is even a possible biochemical intervention associated with BDNF.
     
    Last edited: Jul 12, 2014
    MeSci likes this.
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,822
    Likes:
    4,586
    Cornwall, UK
    or even 86 to 79 :D:smug::lol:

    QED?
     
    Mij, Firestormm, Bob and 1 other person like this.
  11. anciendaze

    anciendaze Senior Member

    Messages:
    898
    Likes:
    1,033
    This is indeed a standard test for dyscalculia. You can find it in "Osler's Web". I can handle it by subtract 10, add 3, but this is a deliberate work-around for malfunctioning mental equipment.

    After my worst episode, (a long period which I'd rather not discuss,) I literally had to relearn arithmetic. This is characterized by a problem which appeared in an episode of "The Big Bang Theory" in which Sheldon worries that Amy has damaged her brain by a girls' night out in which she overindulged: "Quick, what's 13 times 23?" When a friend told me this a few months ago, I missed the point: "Isn't it 299?" This could have been done as 230+69, but I checked that answer as (18-5)*(18+5)=18^2 - 5^2 = 324 - 25. Memorizing squares shifts the load on short-term memory to long-term memory. I find I now have to avoid long chains of quantitative reasoning.

    I didn't do arithmetic this way before I was ill. It turns out this method is also used by people who do mental arithmetic on stage.

    Did I mention that I had two degrees in mathematical subjects before that episode? How about running an Army artillery fire direction center using manual computing methods? Running software research for a startup computer company? If that doesn't prove that dyscalculia is a new problem what would it take to convince you?
     
    RL_sparky, Firestormm, MeSci and 2 others like this.
  12. Bob

    Bob

    Messages:
    8,805
    Likes:
    12,151
    South of England
    lol, @Firestormm, you totally failed the test! ;)

    (Hope you don't mind me laughing - I'm only laughing in a friendly supportive way.)
     
    Mij, Keela Too, Firestormm and 2 others like this.
  13. Anne

    Anne Senior Member

    Messages:
    126
    Likes:
    169
    As many of you have already mentioned, it's very odd that Unger seems to mean that "a consistent, validated way of measuring it that clinicians can use easily" is necessary for a symptom to be included in a case definition. With that line of reasoning symptoms such as fatigue, pain, sore throat, headaches would also be unfit as part of the criteria.

    This sounds illogical. Only diseases with measurable symptoms can be defined? Only symptoms that are easily measurable with current medical technology can be part of a case definition?

    Also, I find it quite remarkable that Unger is claiming there is no validated way to measure PEM, when she herself has it in her power to validate the research on the 2-day CPET tests (Stevens Protocol) by Snell/Van Ness/Stevens and Keller by including the Stevens Protocol in the CDC multisite study (as the patient community requested).

    I am not one for conspiracy theories, I would want to believe that the failure of the public authorities in all countries to deal successfully with ME/CFS is due to ignorance rather than malicious intent - and therefore can change - but when the news of HHS, CDC and NIH taking the wrong turns keep coming so regularly, it's hard to stay hopeful.

    /Anne Örtegren
     
    Last edited: Jul 16, 2014
    Cheshire, Keela Too, catly and 2 others like this.
  14. lnester7

    lnester7 Seven

    Messages:
    1,260
    Likes:
    1,163
    USA
    Best reasoning so far, can you pls pretty pls sign in and present this argument in the next CAcfs meeting :rofl:
     
    Anne, Mary, catly and 1 other person like this.
  15. Mary

    Mary Senior Member

    Messages:
    268
    Likes:
    185
    Well, I wrote an e-mail to Dr. Unger and got a reply today! Am very surprised. I just now replied to her reply. It's a bit lengthy, but here's our correspondence. It starts with my reply today to her e-mail, so you need to scroll down to see the first e-mail and her reply:



     
    Last edited: Jul 24, 2014
  16. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,146
    Likes:
    3,597
    USA
    @Mary Your letter is excellent and thank you so much for taking the time and energy to write it. When someone does something like this, it is on all of our behalf, and I am very grateful to be part of this community. I am glad that Dr. Unger took the time to answer you although I was not satisfied with her response. Hopefully letters like this will get her thinking more about the issue of what PEM is like for individual PWC's? Good job :thumbsup:
     
  17. Mary

    Mary Senior Member

    Messages:
    268
    Likes:
    185
    Thanks Ginger - if anyone wants to reply to Dr. Unger's reply to me, feel free. I know there are angles I may have missed or things could be put differently, etc. And also, the more she hears from, the better!
     
    Gingergrrl likes this.
  18. medfeb

    medfeb Senior Member

    Messages:
    177
    Likes:
    256
    @Mary,

    Great letter and bravo to you for getting a response. Thank you for sharing!

    Based on other exchanges, Dr. Unger's concern with making PEM a mandatory symptom goes beyond the issue of how it gets tested. In the May 2013 CFSAC, she rhetorically asked “If a patient doesn’t have [post-exertional malaise], would you not manage them as a CFS patient?" And CDC submitted a comment to IOM that stated that CCC and ME-ICC definitions were both limited because they required PEM/PENE and that doing so would eliminate those patients who did not have PEM/PENE. CDC's position is that "CFS" should encompass both PEM and no-PEM patients.

    About the cost of testing and practicality of CPET - I'd think a combination of screening tests and patient reported tools like the DePaul Symptom Questionnaire could be used as a quick first pass to identify those who should have more extensive testing like CPET to confirm ME.
    Regarding CPET being a research test - its true that using CPET in the 2-day format has only been used clinically by ME experts and in research. But as a test, CPET is the gold standard for evaluating functional capacity, is accepted by a number of mainstream U.S. medical societies and is used clinically. And the 2-day CPET format is accepted by the U.S. Social Security Administration for proof of disability. So its hard to imagine there would be huge barriers to having it be used for ME.
     
    taniaaust1, Keela Too and Valentijn like this.
  19. Bob

    Bob

    Messages:
    8,805
    Likes:
    12,151
    South of England
    Some of the patients who Beth Unger has investigated do not have PEM. I forget the percentage, but I think she said that roughly 87% of a cohort that she has investigated had PEM. (I'm not certain what patients she was referring to - perhaps she was referring to those from the expert clinics in her multi-site trial - but it might have been another cohort.) She has a duty to serve those patients without PEM, as well as those with PEM, whatever we think about it.

    Just as a point of discussion, perhaps it might be helpful for our community to subtly change our approach to our advocacy, in order to achieve the best outcome with the CDC in the short term. At the moment, many of us tend to say that ME has PEM, end of story. But that's not the end of the story for Beth Unger, because some of her patient cohort does not have PEM.

    So perhaps we need to encourage her to subgroup CFS patients, into those with and without PEM, rather than simply disregarding those without PEM? Her response, in the letter above, suggests that's the direction she's travelling, and if that's what she's doing anyway, then perhaps we should encourage her, as a step in the right direction? It would be a step forwards if PEM was recognised by the CDC to be a factor in a large subset of CFS patients (we might describe these patients as having ME rather than CFS, but Beth Unger might prefer to describe them as being a subset of CFS patients.)

    If we could reach a compromise like that, then the next step would be to get the PEM patients treated and investigated as a separate cohort. One step at a time. It would be a massive step in the right direction to have PEM recognised as a prerequisite for a subset of CFS patients. Perhaps we could think about encouraging the CDC to use labelling such as "CFS typical" (for patients with PEM") and "CFS atypical" (for patients without PEM), until the CDC is ready to use the separate labels of 'CFS' (for patients without PEM), and 'ME' (for patients with PEM).

    Just some thoughts. What do you all think?
     
    Last edited: Jul 24, 2014
    Valentijn, MeSci, Cheshire and 7 others like this.
  20. Snowdrop

    Snowdrop Senior Member

    Messages:
    539
    Likes:
    844
    Toronto
    I do think we should consider ME from the point of view of 'the other'.
    It is understandably hard for us when we are constantly battling others disbelief.

    I have noticed of late that PR is becoming very popular attracting people who are looking for health answers from a community that they see as very knowledgable. I have no problem with this (no real help to offer either though) but it would be good in my opinion if this could be an opportunity to expose new people to the real issues around our illness (the one with PEM) while we honour the fact that they have illnesses that are being dismissed and are in need of help and answers.

    Sorry if this gets off topic
     
    Bob likes this.

See more popular forum discussions.

Share This Page