August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Will S.E.I.D. be accepted as (be proven to be) valid?

Discussion in 'Institute of Medicine (IOM) Government Contract' started by CBS, Feb 10, 2015.

  1. alex3619

    alex3619 Senior Member

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    Big pharma is not a charity group. They do not fund issues without clear pharmacological targets. They will throw themselves at it once they get such targets. To get there always requires other funding sources. Its the almost total failure in other sources that is the issue, and a large part of that is due to ignorance and prejudice in medical and academic circles.
     
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  2. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    This is how you get a serious problem to go away: you smother it with bureaucratic BULLSHIT
    The Soviet Union couldn't ever in it's wildest dreams have come up with a better system of bullshit and lies than what we have.
    They might as well have stood there with pots of white paint in their hands and big brushes.

    Told you this ages ago when this crap started that this was what they'd do

    DO NOT TRUST OR ACCEPT THEIR AUTHORITY OR BULLSHIT!

    The psychology, controls and marketing tools for cover ups and genocides are pretty damn advanced nowadays, anyone who doubts that go have a look at Iraq...that was made "acceptable", the British "Inquiry" into it has disappeared into "
    oh maybe we'll publish after the next Election!", the ruin of an entire country and half a million deaths has been airbrushed away, as has Fukushima.
    Bankers ruined the economy, commit billion dollar crimes, aid organized crime cartels pay for murders, and did any of them go to jail? Nope! Any serious trouble at all, and it's: Standard Operating Procedure: Operation Bovine Faeces! :rolleyes:

    TO HELL WITH THE BASTARDS! I HAVE M.E., NOW GET ON WITH RESEARCHING IT, BEFORE YOU SCUMBAGS IN POWER OR YOUR KIDS OR LOVED ONES SUFFER IT OR THE OTHER SIMILAR ILLNESSES, WHO'S PATIENTS KEEP GROWING IN NUMBER!
    Freakin' morons, if there's a serious problem, FIX IT before it hits you or costs the country too much, instead, they use it as a way to keep pet bureaucrats and mouthpieces in a cushy job, spouting drivelling "self abuse" while things go to hell in a handbasket!

    I am sooooooooooooooooo sick of the Human Race in groups, we seem to behave as morons,
    Group IQ = (highest IQ of group) / (number of folk in group)
    I bet they had a committee to decide if indeed, the Titanic had hit an iceberg and work out a 5 year plan on what to do about it as the water rose around their rings, gah! :whistle: :zippit: :cautious::mad: :p


    I have had it with the bullshit!

    Paraphrasing what Tonto said when he and the Lone Ranger were surrounded by a bazillion Indians:
    "I am a Vulcan, screw you Humans!"
    :sluggish:


    [​IMG]
     
    Last edited: Feb 11, 2015
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  3. Gingergrrl

    Gingergrrl Senior Member

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    @alex3619 Absolutely true and very well said.
     
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  4. snowman

    snowman

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    If SEID or ME sufferers find enough help with the OTC protocols discussed in these forums (without their doctor acknowledging that the OTC stuff helps anything), such that they lose some easily identifiable characteristics for periods of time as long as they stay on these treatments and so long as nothing else interacts negatively with these treatments for too long, how are they classified by forum members? by the SEID criteria? by doctors?

    Would they have to get off of their protocols and restful lifestyle changes in order to have more of the easily identifiable characteristics show up to get a diagnosis based on strict criteria? That sounds like sending suspected lupus sufferers to sunbathe and get a flare so they can be diagnosed.

    Is that the point of a biomarker? that even in times that some symptoms are milder due to treatments, that patients with mild SEID/ME would still be picked up as having it by a biomarker test?

    I wonder about those who have been 'cured', if it is a cure or if it is a very long major remission while still having the disease and being at risk of some factor causing a relapse.
     
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  5. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Actually this brings up a good point.

    Lupus is notorious difficult to diagnose for similar reasons. But it is not decided to take out the more distinctive signs and symptoms from the Lupus diagnostic protocol or make them less important. Also if you don't quite fit, rheumatologists don't tend to send you away and ignore you (this can happen but I don't think it is the norm; and unfortunately neurology tends to make this mistake too often... it's MS or healthy, girlie, no other options): they ask you to come back for regular follow-ups and (depending) may even trial related medicines, even without a formal diagnosis.

    Would it be so difficult to manage ME/SEID in a similar way to that?

    Why do we think we have to have either PEM or include more patients that might have a similar disease? We can do both.
     
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  6. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    The incurable problem with SEID as a legitimate 'replacement' for ME:

    Exertion intolerance may be part of ME pathology but is is also the reserve of somatizers and neurotics.

    Neurotics believe they have CFS or ME and are told so by (hostile to ME) psychiatrists and psychologists who diagnose them with F48.0 Chronic Fatigue, or CFS or CFS/ME. Many misdiagnosed patients can recover after getting rid of their personal demons and accepting their 'beliefs' cause stress leads to fatigue and manifestation of physical problems (fatigue, headaches, poor sleep, digestion problems etc). These people, (misdiagnosed ME CFS) do exist in the clinics of psychiatrists who claim to 'treat' ME, via CBT and GE. They also exist online and in the press. Through psychiatry, ME exists now, as folklore, a story the patients tell. Sometimes, patients do tell stories, but through lax criteria, it is unlikely these people ever have ME, via recovering from an incurabe disease (ME) whilst having mental health problems and latching onto spurious unproven treatments (LP/Reverse therapy etc, avoiding magnetic waves from PC screens, as so forth).

    SEID will not be able to filter these misdiagnosed people out, as there are no tests used in a diagnosis of SEID.

    As with Fukuda criteria/Oxford Criteria 'CFS' (as ME) a danger thus remains in 2015 of claiming the alleged ME replacement (SEID) is medically safe to be 'the new name for ME', it clearly isn't.

    Why?

    The folk with pure mental health problems (non ME, diagnosed as ME/CFS) actively will tell you that by changing their mindset, they stopped feeling exhausted after exertion and gained 'strength', some say they jump into rivers or even swim in one - due to their new found confidence. They learnt to do this with CBT and.or GE and being told nothing was wrong with them in a respectful and motivating manner - precisely what doesn't work for organic ME or CCC CFS, or even F48.0 Chronic Fatigue either (See PACE trial 'CFS' failure results).

    Now. Dr Cindy Bateman and Co are on the CDC website. They are well meaning and trying to help, but still recommending unproven CBT and unproven gentle exercise to 'manage' CFS', when these therapies make people with organic severe ME worse, or are simply ineffective. You can see them here chatting here on video:
    http://www.cdc.gov/cfs/news/features/cme.html

    By complete chance, Dr Bateman, just happened to breakaway with the other ME experts (CFS) who denounced the IOM and their plans to re-name CFS/ME and started to back the IOM. I know, what a coincidence. By another complete chance, the likes of De Meirleir do not recommend CBT or exercise whatsoever, and instead try and help patients through an exhaustating testing regime of inclusion based tests that increasingly find infections and inflammation. (Inflammation IS mentioned by the CME video on CFS), but it isn't mentioned that exercise worsens inflammation!). Hence exercise and CBT is useless for ME as it's not treating the underlying and active problem of immune activation and infection and possible novel autoimmunity, again, worsened by activity. (Exercise increases free radical production, already very high in ME patients and associated to a type of inflammation (Oxidative stress) that can cause pain.

    Tragically for ME patients, S.E.I.D is a poor concept to any doctor keen to decipher a 'mystery' disease like ME, because without a single sign or test to use as a screening tool at time of SEID diagnosis, just like CFS or CFS/ME, anyone can believe they have SEID, or even pretend to have it or be told they have it, accidentally, by a doctor who diagnoses it. (This is why doctors use tests in the doctors office to get the correct diagnosis or likely correct diagnosis), basic premise of medical science of course.


    The SEID gets us nowhere unless we use mandatory screening tests that are ignored by the IOM, but are in use for ME/CFS private patients - cardiac screening, cytokines/chemokines, tick-borne infections and so forth.

    What simple, accepted tests in neurology can doctors use now, to legitimise SEID but cannot, because the IOM didn't insist on using them?

    The most simple and cost effective test for organic SEID is a TILT table test to demonstrate Dysautonomia a neurological problem, found in most if not all PWME. (If a patient is too ill to do this, you can run a Heart Rate Variability test with an ECG). This will show the 'arousal' levels of the sympathetic and parasympathetic nervous systems. Easy, cheap, and reliable.

    There are countless other complex immune and hormonal tests you can use to diagnose genuine a likely (organic SEID or ME or CFS being present at time of diagnosis), but the IOM won't use the tests either in their SEID. NB: We should note, these tests are recommended in the ME-ICC and I should add and these doctors were prevented from being part of the IOM panel - think about it people!).

    No where in any governmental literature does it state CFS or ME can be fatal, despite CFS and ME sufferers dying for decades. Why is this not in the SEID? This is outrageous. To deny deaths in subsets of ME or CFS, just prolongs others suffering, and is a gross insult to the poor patients who do die, and usually very young.

    In my view the neurological abnormality finding (Dysautonomia in ME) should be a mandatory test for SEID and of course, was not made so. Anyone can claim PEM, the question is are they suffering from it medically? This is what TESTS are for. Also a pituitary brain scan (to screen out misdiagnosis or Pituitary disease as CFS) should be used and a Short Synacthen test and a Glucagon Stimulation Test should be used to see if there is Adult Growth Hormone deficiency that mimics many symptoms of ME, or may even occur in ME sufferers. Again, nothing, is recommended (just like the British NICE guidelines). Patients, thus with secondary hypocortisolemia or a degree of Growth Hormone deficiency remain trapped within SEID, having no idea they could be treated. More tragedy.


    Why the acronym ME to SEID is not acceptable:

    The name SEID is saying to a sceptic or a newbie, you can do exertion, but you can't cope with it.
    It says nothing about neurology, about immunity or infection (Unlike ME or PVFS). SEID, is thus a silly label. ME is a much better name or at least Myalgic Encephalopathy, which Dr Shepherd (ME Association in UK) has been suggesting as a compromise for ages. No one listened.

    Another problem with SEID is people with severe ME are permanently exhausted at rest, irrespective if they exert or not. Thus PWME (severe) do not have an 'intolerance of exertion', as they are housebound or bedridden, even if they sit or lay still with active disabling symptoms. The name SEID, clearly implies to the physician you are 'OK' unless you exert, the same way as if you had a 'milk intolerance allergy', the inference is, if you don't drink milk, you're OK too.

    So who would support the SEID away from those who clearly cant as it will cost them their lives?
    People less severely affected, arguably a large proportion. (We have no idea of the % rate in ME who are severe, due to the diagnostic nature of 'CFS'). It was once estimated this was 25% by AFME ages ago, but we have no idea if this is accurate or static.

    So we have the small problem you can have mild what is called ME (Where you can do light exercise) but you degrade and relapse into severe ME (where you can't do anything at all) - thus, you could fail strict criteria for severe ME, because you haven't got progressive ME, or you haven't gotten that sick yet. OK, so that's what ME-ICC is for rather than a strict Ramsay Definition of an Myalgic Encephalomyelitis state.

    This is where tests like a TILT table come in handy with moderate ME CFS, you don't have to be in a wheelchair or housebound to fail a TILT test, you might even still be at college or in part time work and learn you have Vasovagal Syncope, for example, through this test. A TILT test should be mandatory and isn't.

    How did it happen that ME (as SEID) is proposed to be a replacement for ME with the option of cognitive dysfunction or orthostatic problems - both which are hallmakes of ME, not either/or?

    IOM decided to reject the real ME experts when deciding on the silly concept of 'SEID' (to replace ME) and had only one defector (Dr Bateman) to support them, from the original 'group letter' (of ME CFS experts) who all denounced the IOM's proposal as improper. That is very telling.

    Now Dr Bateman, is not an ME expert per se, but someone who runs a private FMS clinic and sees CFS patients who are much higher functioning than people bedridden or housebound. Conversely, De Meirleir goes to Norway to see people in dark rooms who cannot move and wear ear defenders and are increasingly riddled with Lyme, but clearly have ME and not classical Lyme. This is why one person supporting SEID (Dr Bateman) won't work, and thus didn't work as a concept that turned into this SEID idea. We needed many many ME and CFS experts on the IOM panel. The IOM prevented that, claiming that would be 'biased'.How Absurd.

    So SEID, was doomed to fail to begin with as a legitimate ME replacement.

    With no inclusion based SEID tests (mirroring CFS and the UK's CFS/ME), you cannot safely or accurately manage or treat a chronic condition, or research it effectively either. Hence the SEID is not able to ethically replace ME, and we need to use ME-ICC for now, based on screening people for (likely organic ME) using these tests (found to show abnormalities by ME CFS experts) and using these patients screened with such tests in actual ME research, rather than a silly heterogeneous collection of exertion intolerant people who claim in a doctor's office (no tests used to verify) to have cognitive dysfunction and or difficulty standing up - but don't have to demonstrate this to have the SEID. Huh? That is very bad medical practice and a replica of Fukuda CFS all over again.

    A patient claiming to have something without ability to show it, this doesn't help a doctor, and cannot help a doctor help a patient. This is what guidelines are for, to tell a doctor, and advise what tests to run, to enable an accurate diagnosis. SEID doesn't do this. There is no tick box with abnormal tests, that you must meet to be SEID, it is yet again (as CFS) based on patient testimony, a story. That won't work to further good quality medical research. Who benefits from this? Clearly the CDC and other government agencies, who also just happen to denounce 'Chronic Lyme' (misnomer) which is probably ME anyway if some wacky new pathogen is proven eventually.

    The SEID is a predicable diagnostic failure:

    The IOM kicked out all the ME experts and just left Dr Bateman to wave the flag of hope for patients who aren't aware of the history of ME as CFS, or the in-fighting between agencies of who controls CFS research and why. SEID is fine if you have exertion intolerance and can 'pace' your life and take sleeping tablets and pain control drugs (Lyrica), but not fine, if you have ME and have a specific neuro disease, cannot tolerate medications (drug sensitivity) never sleep correctly (weak muscles in diaphragm/asthma/infections/seizures) and live your live constantly cross infected from (community acquired infections) as you have no defence against RNA infections(RN-ase-L gene defect) and also have no NK function left to protect you against viruses and cancer. Hence you will always relapse, and always be sick if your immune system doesn't work correctly. As with CFS,you will fall out of favour, as you fail on management techniques that don't work, as you have ME not a CFS and not an SEID either.

    Would dentists determine the plight of MS because they were 'independent from bias over MS'? No. MS Experts would. So why was this IOM decision wise with SEID 'redefining' ME/CFS? it's cleary not. (We now know from decades of research and private testing that ME and CFS sufferers can be riddled with infections, it's inexcusable to not test for them when diagnosing them!).

    Why did they do this? The answers are all obvious.

    1)Control what 'ME' becomes via the dilution via CFS/SEID - e.g nothing much. This has worked beautifully so far in terms of cost saving. Each patient would need hundreds of thousands of dollars, if not millions for private health insurance to look after them at home. At the moment, it's the parents and the partners (have to leave work) to keep their kids, who grow up to be adults, alive.


    2) Why is there no money for research? Control research and fund psychiatry to prevent single cause, thus 'disproving' ME exists away from CFS since day-1, if you remove the laughable Fukuda Criteria, or Oxford F48.0.

    All SEID does it move the ballpark from psychiatry, to exertion intolerance. Not actually a giant shift at all, when not using any screening test.

    3) Why is there apparently more people with CFS or 'Chronic Lyme' (misnomer in my view) than AIDS but no one does anything? Control via no funding and rejection of the concept. With no funding, and never researching the right cohort, you can drag this nonsense on forever, and ever.

    That's why to me, SEID is just very sad. It stops science in its tracks for genuine ME and it time wastes. The more time wasting using mixed cohorts of fatigue patients, the more single cause pathogen patients (ME) die out. The more patients die out, the less people you have claiming compensation for an acquired neurological disease, blamed on them, through CFS diagnosis and tales of CBT/GE 'working' - all proven false in the PACE trial and another European trial before hand.


    In the ME British National Archives (and from CDC's Reeves) they are clearly adverse to a single causative agent behind ME and want to call it CFS - think why. And think why this goes on, forever and ever and ever and ever. Remember Dr Wessely in the UK MRC archives warns the Department of Social Security in writing not to accept ME as a neurological condition and if they do he will personally campaign for schizophrenia to be neurological too. ME is then rejected, in favour of CFS. (Dr Wessely is later awarded in history, for his services towards CFS), with ME no longer functionally existing, due to the CFS/ME moniker. This is not conspiracy theory, but actual historical fact.

    SEID doesn't stop this shenanigans. SEID aides and abets it with new packaging as no patients are screened for having likely ME, and this directly ruins all future ME research, because of the remaining heterogenous cohort problem. All of the ME experts warned this would happen if the IOM ignored them, it has happened, and we sit here thinking this is a good or even acceptable deal in history with this SEID idea?

    SEID is a bad deal for anyone with severe ME, and a good deal for people with moderate ME or CFS who think they will be taken more seriously by the wider medical profession because of some strongly worded hyperbole about how serious SEID is, during launch and in a few PDF's.

    The wheel simply keeps turning, and underfunded wheel, since 1969. So in my view, no. The SEID will never be accepted as proven valid, the question posed by the OP. And that is why. ME is not SEID, unless it has all core dysfunctions required as a screening tool associated to ME research. And it doesn't.

    To save this for disaster, you rapidly create subsets. ME 1. ME 2. ME 3. ME 4. Etc. Then you don't have to be mega ill to have ME, and conversely you can be mega ill and removed from treatment and research in people who aren't, this is common sense, and why there are multiple forms, subsets of MS, for example (relapsing remitting, progressive etc). We know this also happens in ME.

    The psychiatrists are against a subset for CFS (claiming there are none) and so are the CDC and the IOM, clearly (CFS remodelled as SEID)

    Subsets could be created within 6 months, since 1988. Easily. Patients al over the world could now be more healthy and subsets do what SEID can never do:

    Subsets could be on antivirals (if screened for infection), and antiretrovirals (if screened for RT activity) and antibiotics (if screen for Lyme and co-pathogens)

    Subsets could be on midodrine for POTS and beta blockers to control their denied OI tachycardia and blood pooling.

    How utterly tragic. The people this has all affected most, are the people who are now deceased from ME due to this absurd time wasting and un-necessary complex stumbling over how to 'manage' a global disease with no funding.

    I feel for them most, and we must not forget them, as they paid the ultimate price in all this accidental mistake of managing a post viral ME, turned into CFS, turned into it's your fault, then woops, no it's not, but we won't let ME experts define what you have sorry, because we say so.

    That as they say, is not cricket and so I won't play the game, until it's no longer rigged to fail.
     
    Last edited: Aug 10, 2015
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  7. Izola

    Izola Senior Member

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    Hi:
    No.

    But, first, I would have to vomit before thinking about it. I have had 30 years of dumb and false criteria, and had to depend on Dr. Peterson's patient's update reports and a couple talks with Dr. Peterson, Carol Seiverling's "Dr. Cheny updates, and massive reading until CCC and ICC came along. Medical books aren't cheap.

    Frankly, the IOM list isn't very exacting and the "6 month thing" was made up by CDC (frauds) who knew it was ME and knew the first 6 months of rest was the beginning of the best chance we had of recovery.

    And, It is my firm informed belief that ME isn't CFS and CFS could be dozens of illnesses or conditions that, for the patient's well being a correct diagnose is necessary. Or, One has ME and needs an ME diagnosis. not CFS. The original CDC criteria made no sense and was a "wastebasket diagnosis" of the worst and most harmful kind. Their intent was to "disappear ME and the pesky patients.

    I hope the SEID diagnostic list works, if that is what we have to have. Frankly, I fit almost all of the ICC pick "one out of a list of four." etc. I get the whole list. The difference with the ICC is that it gives guidance to the doctor and patient. We don't have to Google to find out what it means and then explain it to the doctor. PR will get a lot of traffic with SEID.

    A good, informative history is "Osler's Web," by Hillary Johnson. I read it 5-7 times over the years. (As Katrina Berne said, "We only need one book now and we can hide our own Easter eggs.)

    My doctor would look at S.E.I.D. it and throw it in the trash--

    "More waste basket diagnoses' keeping new patients busy trying to find out "what the h---was this?" I don't think that S.E.I.D criteria is good for the newbies or their doctors. Who's going to tell them and their doctor what it means?

    I was yelled at and yelled back at a dozen or two doctors who in various and angry manners (well no manners at all) who all used word like "lazy", "crazy" "nuts" a waste of time" . . . well, you get it. It wasn't fun, though I did have a little fun with the Doc of the $300. hair do who couldn't explain the basic tests he ordered -- oh, yeah, he wanted money first before he threw me out,-- his nurse sat there and stifled laughs while I toyed with his ignorance. That was before my brain shrunk and rattled out my ear.

    Did I hear right that the IOM people said regular doctors wouldn't be able to understand the ICC? Or was that the NIH perturbers. My 10 year old granddaughter could understand it. All the information is right there. Now we are back to "malaise." I foresee "Lazy, crazy" fights with doctors again.

    I ask, then, do doctors have to learn to channel information spirits to interpret and fill in a vague list of unexplained stuff. Sorry. I am angry at dumb people right now-- i.e., the IOM pleading intelligence. I view the SEID criteria as dumb and potentially dangerous for patients.

    Take care. iz (all grumpy and divisive.)
     
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  8. Izola

    Izola Senior Member

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    Diagnosis 1rst: You have an incredible mind. I am blown away. I have had pesky little thoughts about SEID that I chased away before anything jelled. If I was at my very best [before ME] I could not do what you just did. And I was very good at what I did.

    I wrote my first response to the SEID issue (above) with what fell out of my brain without further analysis. I should have read what you have to say before that, but I was just skimming, getting ready to sign off and listening to Dylan circa '63 before going to Baez to be sung to sleep.

    I have always had a funny feeling about Dr. Bateman just from vaguely remembered stuff I read or heard--but nothing obvious. Damn.

    Thank you for your contribution to the rest of us mired in the mud of greed, power, and inhumanity.

    Your logic is spot on.

    THX iz
     
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  9. Izola

    Izola Senior Member

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    Justy: They only let me give you one like. Here is a basket full more. :gift:. iz
     
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  10. Izola

    Izola Senior Member

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    No. It's a sham. and The words " 2) post-exertional malaise" all front and center with no explanation or measure is sure to get a non-SEID all rolling over laughing like Hell. iz
     
  11. leokitten

    leokitten Senior Member

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    Sorry if I'm behind on the literature and evidence regarding 2-day CPET, but why can I find only one small study on Pubmed?

    Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO₂peak indicates functional impairment.

    I thought the 2-day CPET has been around for a while I was surprised to see so few papers on the subject.

    I know that it's the first accurate diagnostic test to identify PWME and distinguish them from healthy controls and people with other diseases that have overlapping symptoms. So why isn't anyone conducting a larger study to show the validity, sensitivity and specificity of this test so that it becomes incorporated into the diagnostic criteria?
     
    Last edited: Aug 11, 2015
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  12. Valentijn

    Valentijn Senior Member

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    Expense and lack of government funding.
     
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  13. Scarecrow

    Scarecrow Revolting Peasant

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    This is an earlier study, which appeared in the Journal of Chronic Fatigue Syndrome:

    http://informahealthcare.com/doi/abs/10.1300/J092v14n02_07
    Diminished Cardiopulmonary Capacity During Post-Exertional Malaise
    2007, Vol. 14, No. 2 , J. Mark Vanness, Christopher R. Snell, and Staci R. Stevens

    Here's another from 2010:
    http://www.translational-medicine.com/content/8/1/93
    Patients with chronic fatigue syndrome performed worse than controls in a controlled repeated exercise study despite a normal oxidative phosphorylation capacity
    Ruud CW Vermeulen
    1*, Ruud M Kurk1, Frans C Visser1, Wim Sluiter2 and Hans R Scholte3

    The first study isn't listed on PubMed but the second one is.

    It wouldn't be ethical for this test to be anything other than voluntary. I don't think it should be used diagnostically. For me, the value in these studies is in their potential to reveal what has gone wrong, not in demonstrating that there is something wrong.

    Fluge and Mella are using CPETs on a voluntary basis in their Phase III trial but I can't recall if they are repeats or just single testing to demonstrate a change in performance in response to rituximab. I don't know if they are doing any subsidiary metabolic testing before and after the CPETs - hope so.
     
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  14. Scarecrow

    Scarecrow Revolting Peasant

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    @leokitten forgot to tag you in my previous post.
     
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  15. leokitten

    leokitten Senior Member

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    Thanks for the additional paper links. I agree this test can potentially cause long-term PEM and permanent deterioration.

    I guess the reason I asked this question is because after decades this is the first and so far only accurate diagnostic test. We don't have anything else and in particular for those with new disease (before exercise can cause any serious worsening of illness) this would be a very effective diagnostic tool. Patients wouldn't have to wait six months before getting diagnosed, I believe ME/CFS is the only disease that has such a requirement and this is because we don't have a diagnostic test.
     
    Last edited: Aug 11, 2015
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  16. leokitten

    leokitten Senior Member

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    Why aren't Workwell and the other sites that already are doing 2-day CPET on patients for disability etc, accumulating this data as part of a study? That would save a lot of money as they would only have to fund the control groups.
     
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  17. Valentijn

    Valentijn Senior Member

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    Do you think they get enough patients for that? And even just funding the control group would be quite expensive, if it was a large study.
     
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  18. Scarecrow

    Scarecrow Revolting Peasant

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    I understand but people develop ME at various rates and due to seemingly different factors.

    I think we'd all agree that the last thing you'd want to do to someone with mono / glandular fever that has gone on a bit too long is subject them to an intensive exercise test. We know enough now to realise that a small percentage of people take a year or so to recover and that some never do, or do so after a decade or more.

    I don't think that it's acceptable to subject anyone who has had an infection - of any sort - to an enforced CPET.

    There are others of us for whom the illness starts gradually, where I agree that a 2 day CPET may not be a bad idea. Between the ages of 15 and 20, I fell into this category. If the concept of a 2 day CPET for ME had existed then, it might have been worth it. After all, I was exercising anyway - I just had no idea why it was so difficult. Fast forward to age 21 and a chest infection that caused such a huge insult that I had a 10 day amnesia on top of a marked physical and cognitive worsening, I was in no fit state to be subjected to a single CPET, let alone a repeat test. And I was 'only' moderate severity.

    A 2 day CPET might have a place in confirming a diagnosis but it shouldn't be required for one.
     
    Izola, alkt, Sasha and 2 others like this.
  19. leokitten

    leokitten Senior Member

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    Maryland
    Neither of us has any idea how many patients they get, but I'm sure it's a lot more than 10-20 people per site over all these years. If all the sites doing the test collaborated they could've easily by now gotten over 100 patients.

    I agree that the control groups, healthy and preferably other illnesses with similar symptoms, would be expensive but my line of reasoning was just to mention ways to reduce costs.

    It would go a long way to have a high quality study on this to provide further irrefutable evidence to those in the scientific and medical community as well as the public that this disease is very real.
     
    Izola and Kati like this.
  20. Denise

    Denise Senior Member

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    The patients who go to Workwell or Keller or _ for disability assessment are paying for the testing.
    Would having patients pay for the testing be permissible in a study?
     
    leokitten and Izola like this.

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