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Physical effects of a reconditioning programme in a group of chronic fatigue syndrome patients

Discussion in 'Latest ME/CFS Research' started by Dolphin, Mar 5, 2016.

  1. Dolphin

    Dolphin Senior Member

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  2. Invisible Woman

    Invisible Woman Senior Member

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    .... and exactly which diagnostic criteria were used for that one, I wonder?
     
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  3. Dolphin

    Dolphin Senior Member

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    It looks like only a subset of the people who started the activity/exercise program, those who completed the program, took the follow-up exercise tests although it's not 100% clear to me. 33 people started the exercise program, 22 people (67%) finished intervention stage and 20 of them completed the whole protocol, intervention stage and monitoring stage (61%).

    The abstract doesn't mention that the maximal workload and VO2 differences were not statistically different to the control group at follow-up (assessment two).

    Guillamó Table3.png
     
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  4. Dolphin

    Dolphin Senior Member

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    Fukuda et al. (1994)
     
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  5. Justin30

    Justin30 Senior Member

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    I think its time to scrap....some of these criteria that fall under the Myalgic Encephlomylitis Umbrella. I say this because if you are obese, have undiagnosed diabetes, are low in iron, deconditioned, smoke cigarettes, are depressed, have vitamin and mineral deficinecies, have a misdiagnosis, a metabolic disorder, have undiagnosed cancer, have poor sleep quality, have an undiagnosed sleep condoition, have chronic pain disorder, reactived viral infections, Ehler Danios Syndrome, Dyautonomia, undiagnosed heart condition, this goes on and on and on and on and on and on...............

    Im really getting to the point they have to just absolutely junk these criterias and focus on a criteria that only highlights the multisystem dysfunction......

    A Dr should bot be able to label you wth ME/CFS if you meet criterias such as the FUKUDA Unless every other disease had been ruled out....this will ensure we are not dealing with a group of people that dont fit the CCC AND ICC CRiTERIA of ME.

    I know I am going on a rant but I am pissed. If you have what looks to be ME and you meet all criteria:

    "ALL DRs SHOULD SEND YOU FOR A FULL SPECTRUM OF TESTING FROM BACTERIA, PARASITES AND VIRUSES ALL THE WAY THROUGH TO MS PANELS ETC."

    Then ME/CFS/SEID can be diagnosed. I know this can take a while and a lot of Energy and some people cant. But in our modern day society ME/CFS in Study done in I think it was Australia showed the lowest QOL scores 30% lower than 16 of all the listed major comorbid disease.

    When a person pops up that looks like they fit the ME bill they should be fast tracked through testing. This is where we need specialty centers. More experts.

    This recommendation should be made in the mean time....scrap these junk criterias....

    Then define if the disease has subsets or stages....find biomarkers...etc.

    Stop wasting money on these studies....i hate watching money fly out the door on when have it or more will be skewed.

    Im not saying that some of the people may have a mild to moderate ME. Just so i dont catch some flying bullets.....

    Some people that are healthy need to grow a pair do some research and stop being afraid of the machine....when I recover i will speak and as loud as I can....
     
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  6. Denise

    Denise Senior Member

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    @Justin30 I hope you will clarify - I understand wanting a clean and clear set of diagnostic criteria (and yet many people with ME also have EDS, OI, etc.).
    Are you suggesting that diagnostic criteria exclude all co-morbidities?
     
  7. panckage

    panckage Senior Member

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    This study looks fine to me as long as we are clear who the result applies to. People with severe CFS would not have been able to come to the clinic for 12 weeks of exercises. The result is relevant to those with milder symptoms
     
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  8. Esther12

    Esther12 Senior Member

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    Only seen the abstract but:

    If you randomised 46 patients to an intervention and only 20 finished it that would seem to make it pretty difficult to say much about whether the intervention was helpful or not.
     
  9. Justin30

    Justin30 Senior Member

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    No i think they should do a clean follow up to rule out all know causes of fatiguing illnesses. Ie.

    If you do not have at least one of the criteria in the CCC or ICC criteria than you should not be labeled ME/CFS. OI is a part of these cirterias if you dont have or a form of dysautonomia than????

    Further once these criteria have been met a list of all tests to rule out other treatable disease should be done. My cfs specialist stopped all testing after he labeled me with cfs I could have had cancer!!!! Just saying I didnt have cancer but the second you get slapped with the ME CFS label in most Countries they stop testing you.

    MCAS, EDS, or other disorders of the immune and nervouse system can take years to diagnose and from what I have read need highly trained experts that arent located evrywhere. Plus they somewhat tend to lack all features laid out in the CCC and ICC Criterias.

    Moving further. Dysautonomia has the biggest oerlapp with ME/CFS with regards to symptom overlap and presentation if you have true ME. This is Why Dr Chenney in his last couple of years focused so much on the Heart Condition of ME/Patients. You could also argue that Post Lyme has this overlap too but is likely more of a cause/trigger like EBV, etc

    Fukuda is so vague with regard to symptoms PEM for an Obesity problem could be obbsessively consuming 5 Baconators from Wendys' laying on the couch, passing out, getting up the next day earlybecause their blood is like sludge and there body was overwhelmed, they slept poorly because of indigestion, and it could take days for their bodies to clean up because of the lack of nutrients in the food and over consumption of calories. Not to mention their joints hurt becaus their bodies were never designed to carry around hundreds of extra pounds. Throw out the Fukuda Criteria...the one thing that it does mention thatvis soemwhat but meagerly Ok..is to check for a list of other diseases to rule out CFS which they ahould have compiled a massive list for but didnt...and my final point is that Most Dr. GPs, Specialists only have a limited time, only look at the criteria, can only make so many specialist referals per appomtment, will only offer you maybe some testing, and wvrything else can be like pulling teeth and nails to get tested adequately as soon as your "LABELED ME/CFS'ED."

    So I guess what I am saying is that if the defenition does not list the most common abnormalities and list exactly the symptom
    Then the criteria should be scrapped. There are over 70 sysmptoms which should be included.

    See the CCC Criteria for Neurological its a great example of what I am refering too:

    http://phoenixrising.me/research-2/...nadian-consensus-criteria/canadian-definition
     
  10. Sean

    Sean Senior Member

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    Yeah, that drop out rate seems rather high.
     
  11. Denise

    Denise Senior Member

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    @Justin30 - thank you for clarifying.
    I agree that diagnostic criteria need to be clear, and I also think that once someone is diagnosed (with ME or with anything), patients deserve to be followed closely because as we know, a diagnosis of ME does not preclude the onset of other diseases.
    I also think that frequency and severity of symptoms should be part of diagnostic evaluations.
     
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  12. Aurator

    Aurator Senior Member

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    Or rather people having a different illness altogether.

    I know someone more severely affected than me, but we both get PEM. Having been an athlete before I fell ill, I have tried repeatedly to exercise in the hope that my body will adapt and grow stronger, but it seems only to have grown weaker.

    I simply do not recognise this whole business of improving strength and endurance through increasing exercise without aggravating symptoms. That has categorically not been possible for me since I became ill, however much I've wanted it to be and however much other people have apparently believed it to be.
     
  13. barbc56

    barbc56 Senior Member

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    Do studies even bother addressing this issue? It's a huge factor when it comes to patients with me/cfs as well as other chronic health conditions. Even if the study doesn't require an excessive amount of energy relatively speaking, such as blood tests, frequent monitoring, etc., the reality is that it's unrealistic to expect many patients to even make it to the study site.

    Two different times I have signed up for a study but wasn't able to make it. Then I think of all the events, appointments that I've had to cancel since having this. It's simply a part of our situation and it needs to be taken into consideration.

    Doctors don't make house calls. Sometimes a nurse will for specific conditions, but not many that I know of. There are times when the study needs to come to us and I don't think that happens very often, if at all, unless you are hospitalized.

    It's expensive and time consuming to do this but depending on the study, it's such a big impact that if it's not accounted for then the results may as well be trashed. Since there are studies that already should be thrown in the trash, it's a double whammy.

    Have I missed studies that do this? I don't know if this would compromise the study when there are patients not participating from home. This study does have a portion that's home based but that's after participation someplace else.

    Sigh. Thinking about this makes my brain even more frazzled.
     
  14. Justin30

    Justin30 Senior Member

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    I guess what it really boils down too is to stop trying to use standard treatment modalitites for real organic illness on CFS that is a real organic illness that can be impacted by either modality.

    CBT may be ok for you if you are lightly affected by the disease and can have long intuitive conversations with a psych without having a blank stair on your for an hour cause your brain wont work cause they dont have a bed for you to lie down in, or that the lights arent triggering you, etc. Plus travel, plus walking or being subjected to overstimulating environments.

    GET just give it up already....it makes us worse as ME/CFS is an organic disease that impacts the mitochondia in the body therefore you dont have the energy to expend or the energy to repair or the energy to build....the foundational network of biological processes that a normal non disease ridden human being has.

    What I say to the GET and CBT'ers is GET out of the way so the real reaearch can begin!!!!

    Please if anyone from ME associations wants to use anything from PR posts to send to these ill informed researches please be my guest. I getting sick of it....just sink with the ship......PACE will die and dicredit the individuals involved. This is shear ignorance on behalf of he medical community and large egos that do this to some of the most ill.
     
  15. Justin30

    Justin30 Senior Member

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    Reading this junk just set me off...today....whenever I see a study like this is published does ME Groups send them a kind email with the P2P report and IOM report along with a selection of cut and paste resposnse from the MEcommunity such as @barbc56 comments, etc. About not being able to make it to the studies.

    Along with that letter could be a letter to the practicing health authority or University. And a letter stating "That the most up to date research shows that ME/CFS patients suffer a biological condition that affects the body in numerous ways including the systems in which produce energy and therefore by subjecting them to these sorts of tests can harm them and include a part about not accomodating them at home and not properly screening the patients" and than bamb...send it to the media publication within that country.....CBT and GET studies coming out should be hit by all ME organizations its a letter, a template, some comments, a brief talk and news from the latest research in the US and Norway. Ok...ok got to stop ilterally a getting a headache and my vision is blurrying stupid mitochodrial issues.....
     
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  16. Esther12

    Esther12 Senior Member

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    PACE did a good job of chasing people up to get data (at least until 12 months... can't remember the LTFU data now). That could be one reason why their results were poor? It is an obvious problem with a lot of trials though.
     
  17. Dolphin

    Dolphin Senior Member

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    FYI:
     
  18. Esther12

    Esther12 Senior Member

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    Thanks.

    If they're not properly randomised, but partially self-selected based on their beliefs about their ability to increase their current fitness, that's still a problem though. 33 down to 20 is not ideal either. A quarter of those being randomised to treatment not starting therapy seems a bit odd, especially when the other arm was just a control group (?): why were they being randomised if they didn't want to, or couldn't, take part?
     
    Last edited: Mar 5, 2016
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  19. barbc56

    barbc56 Senior Member

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    You have summarized what took me several paragraphs to say. :thumbsup:

    I've mentioned this many times but it bears mentioning again. I had this type of therapy many years ago. The therapist was a nurse, who worked with patients with chronic illnesses for decades, saw a need for this type of therapy and went back to school to get a degree in counseling. She basically wrote her own job description.

    It was very practical which is the kind of therapy I most respond to but she also knew the importance of the very real need to vent. I was never told this was a result of faulty beliefs or not trying harder. She might encourage a patient to do something but was realistic enough to know that
    not everything fits for everyone. Processing was also important without having an agenda that there was one correct answer. She understood the dynamics of how this DD impacts relationships.

    As I said she had very practical suggestions but just as importantly helped you process your DD with questions, a lot of listening and taking this process after with you and open to having you occasionally check in.

    As far as I'm concerned this woman was a saint. I had tried different therapist before ill but rarely a good fit which is to be expected as people and therapist have different personalities. Unfortunately, she retired and was never replaced. Bottom line, she understood the human factor.

    I've often wondered if this is offered as a specialty for future therapist. AFAIK, there wasn't at the time I saw her, twelve years ago, (yikes!) but don't know about the psychology programs offered today.

    Unfortunately, she retired and was not replaced due to cuts in the budget. I think there are nurse practioners within many psychiatric practice but not sure if it goes beyond the medical issues.

    I've had some, like doctors, not all very good nurse practioners even compared to a doctors visit. Nurses whether NPs or not have a tough job and I've often been impressed by their expertise, compassion working under extremely difficult conditions some that some doctors don't experience.

    I'll stop ranting as I need to get to bed. BTW, I stop editing after five attempts, sometimes less so take that under consideration!:D
     
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  20. alex3619

    alex3619 Senior Member

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    Details.

    The primary issue is not fitness, its post exertional crashes. If I am reading it right, this was single CPET. Its the 2 day CPET that gives relevant data.

    Anything could hide in the patients who did not complete. Its too many.
     

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