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Article: 2011: A Look at the Year Ahead For ME/CFS

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 10, 2011.

  1. aruschima

    aruschima I know nothing

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    Enid, I want to make something clear. I find Friedman insulting. The notion that this man is contributing in any way to
    serious research and treatments for our sick children, is to me, a mother of son who is seriously ill, and me by the way too, insulting !

    Not to mention the risk Viagra poses for sick patients who suffer from various diseases, especially those suffer from heart diseases.
    Oh, but Friedman most probably does not even recognize that we are suffering from any disease.

    Here just a small warning about Viagra and compare it with the findings of biological abnormalities in ME/CFS patients !


    I would ask Obama, if I could , I can't , but I can ask Cort, to please not hail Friedmans BS as research for ME/CFS, remove it from the list of research which is important to us . Thanks
  2. Enid

    Enid Senior Member

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    i can't say otherwise unless this drug can indeed aid some (not its original intention as happens) We are into the rather more chemistry - I was on Gabatin for some time - for pain from my GP - I upped the dose and found deep sleep again - nows there's a thought - it obviously calmed brain activity (GP could not grasp - too confusing with all the rest). And if you speak of anger I well know having had 5 years ago 3 Doctors and a pyschiatrist collapsed in A&E (second time) pronouncing me insane. (Bet they cannot do the Times Crossword - pathetic).
  3. urbantravels

    urbantravels disjecta membra

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    Hold on now. Though of course it makes for funny funny jokes, and seems like it might be a bit of a long shot to treat CFS, I wouldn't get so upset about it as though the very idea was an insult. Viagra wasn't even first developed as an erectile dysfunction drug; it was a drug they were testing for angina and blood pressure and found by accident a "side effect" that became the best-known use of the drug. Viagra is also approved as a treatment for pulmonary arterial hypotension and is used for a few other things besides the "obvious", although it turned out to be no good for angina.

    So if they're looking at this as a treatment on the theory that increasing blood flow to the brain might help some of our symptoms, since POTS and related problems with blood flow seem like they might be an important part of the puzzle with ME/CFS, why is that so ridiculous? As for side effects, are you opposed to every drug with potential side effects? A responsibly conducted clinical trial would of course eliminate from participation anyone who has known contraindications to the use of the drug, and if by some chance this turns out to be a useful treatment and gets approved, prescribing physicians would need to apply the same precautions.

    I don't know anything more about it than that, and my wild guess would be that it's a shot in the dark, a small study happily sponsored by the drug company on the off chance of expanding their market for the drug (it may surprise you to know that the market for erectile dysfunction drugs is actually somewhat saturated and sales have not been, er, rising significantly for some time.) But the idea behind it does not seem to me to be ridiculous or offensive on its face. THOUGH I CAN NEVER RESIST THE FUNNY, FUNNY JOKES.
  4. Enid

    Enid Senior Member

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    Very sensible Urbantravels - (my bro Prof Neurologist rtd. US testing drugs MS capacity to say we do not know everything) . Humour important too.
  5. Cort

    Cort Phoenix Rising Founder

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    So many great minds out here! :D:D:D
  6. aruschima

    aruschima I know nothing

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    I find it offensive and in the face, because such a study is as questionable as graded exercise and cognitive behavior therapy in ME/CFS patients as a suggested treatment , or the proposed study by the CDC . Yes why not, we such desperate people, we just try anything, even if complications of such interventions could kill us and are just another waste of research funds, which are desperately needed to find the real cause and real treatments for ME/CFS !
    :victory: yeah, good idea , just splendid, find it extremely funny !

    Add on: the CDC Population-based surveillance , ha ! Follow healthy people and see how many develop AIDS, very effective ! A joke and a unbelievable waste of recourses which could be spend on real research in to our disease ! But in Acquired Neuro-Immune Diseases like ME/CFS everything goes, just as long as they can keep channeling our funds into rubbish bins and into the backyard of Wessley cohorts.

    Here is what we really need !

    Patients are demanding global policy changes, and immediate action from their governments around the globe.

    -Validate and classify ME/CFS as an acquired neuro-immune disease.
    -Update and implement the Canadian Diagnostic Criteria as the standard case definition for all research and clinical purposes
    -Fund research and establish specialised neuro-immune research- and treatment institutes like the WPI, around the globe.
    -Include ME/CFS, as an acquired neuro-immune disease, in educational curriculum for medical practitioners and nurses
    -Ensure immediate access to disability benefits, health insurance, and medical care for all ME/CFS patients.
    -Ensure immediate access to special needs education for children diagnosed with ME/CFS (and associated neuro-immune conditions).
    -Pass legislation to prevent further discrimination against, and human rights abuses of, ME/CFS sufferers.
    -Governments around the world shall take immediate action to protect the blood supply! Ban all ME/CFS patients from blood donation.

    Try standing on you head to increase blood flow.
  7. aruschima

    aruschima I know nothing

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    AND : while such BS is receiving attention and research funds, the WPI has submitted 10 grant applications, and none have been funded!!!

    Very funny , :victory: indeed , for whom ?

    I am furious, insulted, frustrated and angry......................

    And do not understand the nonchalant attitude here :ashamed:
  8. pine108kell

    pine108kell Senior Member

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    I don't know Dr. Friedman. If he is a bad researcher or doctor then I disapprove of him spending any CFS money on research. I also agree that addressing relief to particular symtoms should be secondary to more important research that looks at root causes of overall illness. Nevertheless, I feel that blood flow to my head is one of my worst symptoms and I am very sick, unable to work or function normally most of the time. Therefore, I think it is reasonable to look at drugs that might address symptoms if they are low cost studies that have a chance. Viagra already exists and is relatively cheap and as far as I know no one has tried it for CFS blow flow issues.

    Again, I don't know Friedman's work or if testing Viagra is a reasonable thing to do, but addressing blood flow to the head is a reasonable thing to address.

    On the other hand, I have no patience with graded exercise, CBT, etc as a research topic, as this does not work.
  9. floydguy

    floydguy Senior Member

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    I agree. The most important thing for ME/CFS is to get agreement and codify that this is a neuro-immune disease with real tests and diagnostic guidelines. Almost everything else is a distraction and possibly counterproductive.

    This loosening of the criteria to fit every waste basket condition is an anchor that is pulling us further and further to the bottom! It's got to be addressed!
  10. aruschima

    aruschima I know nothing

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    Thank you !!!
  11. Bob

    Bob

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    Hi SpecialK,
    It's not quite what you've asked for, but I just thought I'd let you know that an 'XMRV calender' has been started here:
    http://forums.aboutmecfs.org/showthread.php?9126-XMRV-MRV-Calendar
  12. SpecialK82

    SpecialK82 Senior Member

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    thanks Bob - I love the calendar, it will keep us focused with a click of the mouse!
  13. Cort

    Cort Phoenix Rising Founder

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    I agree that I would rather the WPI get their grants funded and of all the studies I'm not that excited about the Friedman study but consider what would happen if it was positive; that is if the study showed that Viagra (I assume in small doses) increased blood flows to the brain and relieved symptoms in people with CFS? Did we just get closer to legitimization? I think we did. The data on blood flows to the brain alone will be interesting.

    Maybe if you took away the Viagra label it would seem like a more significant study

    I'm not at all happy by the way at the poor performance of my second brain for the past 30 years:(:( and I've always thought THAT must be a consequence of my CFS. That is no small thing (well actually it is - just can't resist the puns). I feel they must go together......I haven't had a good you know what for a long long time....There must something to that......

    Here's something from Wikipedia on other uses of Viagra

    Several of the other research studies are focusing on reduced blood flows to the brains.
  14. aruschima

    aruschima I know nothing

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    Cort, If you insist viagra could be "serious" possible treatment to look into , I like to have the full name of Friedman, links to this proposed study, (background information) and information on previous studies by Friedman.

    There are several Friedman with online shops who sell Viagra. I like to know if this Friedman in involved in any of this online shop's, before I even consider waisting my time and energy looking into possible medical (scientific) implication of this drug for ME/CFS; i like to have those facts cleared first !

    And I like to have, if at all, Judy Micovits, Dr. Chenney, and other ME/CFS specialists looking at the possible interaction/consquences of such a treatment for ME/CFS patients, who are suffering already of congestive heart failure , tacharida (heart rhythm problems), bowl and dygestive problems(ulcers?), kidney and liver problems, seizures, and so forth.

    You find the real cause of your brain problems, you do not have to adress them with questionable treatments!

    Right now, as Floydguy said ; "Almost everything else is a distraction and possibly counterproductive ", it is, what it is.

    Thank you
  15. urbantravels

    urbantravels disjecta membra

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    Aruschima, are you seriously suggesting that no new symptomatic treatments should ever be investigated for CFS, even if they could help with our symptoms and alleviate our suffering?

    This is an actual approved clinical trial, all the information about it is available at the clinicaltrials.gov database.


    http://clinicaltrials.gov/ct2/show/NCT00598585?cond="Chronic Fatigue Syndrome"&rank=21

    Use of Sildenafil (Viagra) to Alter Fatigue, Functional Status and Impaired Cerebral Blood Flow in Patients With CFS
    This study is currently recruiting participants.
    Verified by Charles Drew University of Medicine and Science, February 2009
    First Received: August 31, 2005 Last Updated: February 23, 2009 History of Changes
    Sponsor: Charles Drew University of Medicine and Science
    Collaborator: Pfizer
    Information provided by: Charles Drew University of Medicine and Science
    ClinicalTrials.gov Identifier: NCT00598585

    Purpose

    Use of Viagra to Alter Symptoms in Patients with Chronic Fatigue Syndrome (CFS)

    Condition Intervention Phase
    Chronic Fatigue Syndrome
    Drug: Sildenafil (Viagra)
    Drug: Placebo
    Phase IV

    Study Type: Interventional
    Study Design: Allocation: Randomized
    Control: Placebo Control
    Endpoint Classification: Efficacy Study
    Intervention Model: Parallel Assignment
    Masking: Double Blind (Subject, Investigator)
    Primary Purpose: Treatment
    Official Title: Phase 4 Study of the Use of Sildenafil (Viagra) to Alter Fatigue, Functional Status and Impaired Cerebral Blood Flow in Patients With Chronic Fatigue Syndrome.

    Further study details as provided by Charles Drew University of Medicine and Science:

    Primary Outcome Measures:

    * The principal aim of this study is to determine whether chronic fatigue syndrome (CFS) is due to inadequate blood flow to the brain and to test a medication, Viagra, which should help increase blood flow to the brain and improve the symptoms of CFS. [ Time Frame: 6 weeks ] [ Designated as safety issue: Yes ]


    Estimated Enrollment: 30
    Study Start Date: July 2002
    Estimated Study Completion Date: December 2010
    Estimated Primary Completion Date: December 2010 (Final data collection date for primary outcome measure)

    Arms Assigned Interventions
    1: Experimental
    Double Blind study- one group will be on Sildenafil (Viagra) and the other group will be on placebo.
    Intervention: Drug: Sildenafil (Viagra)
    Drug: Sildenafil (Viagra)
    25 mg tid of either Sildenafil(Viagra) or Placebo for first week. 50 mg tid of either Sildenafil (Viagra)or Placebo for second week. 100 mg tid of either Sildenafil (Viagra)or Placebo for 3rd,4th, 5th and 6th week of study participation.
    2: Placebo Comparator
    Intervention: Drug: Placebo
    Drug: Placebo
    Placebo

    Detailed Description:

    Use of Sildenafil (Viagra) to Alter Fatigue, Functional Status and Impaired Cerebral Blood Flow in Patients with Chronic Fatigue Syndrome.

    Eligibility

    Ages Eligible for Study: 18 Years to 49 Years
    Genders Eligible for Study: Both
    Accepts Healthy Volunteers: Yes
    Criteria

    Inclusion Criteria:

    * Patients meeting the CDC definition of CFS.
    * All races, ethnicities, socio-economic status (SES), and gender
    * Age greater than 18 (because of concerns about radioactivity, we and the Cedars-Sinai and Harbor-UCLA IRBs have decided not to enroll subjects below the age of 18).
    * Age less than 50. Because of concern of sildenafil exacerbating coronary artery disease, we will only enroll patients younger than 50.
    * Able to provide informed consent.
    * Willingness to be off all medicines and supplements for 3 weeks prior to the study.
    * Patients with psychiatric disorders (see below) will be included, if they could be off their medications, and if their psychiatric diagnosis clearly occurred after their fatigue symptoms began.
    * Patients with concurrent fibromyalgia will be allowed to participate if the meet diagnostic criteria for CFS.

    Exclusion Criteria:

    * Disabilities that would prevent them from participating in the study.
    * Current use of prescription medicines (starting at 3 weeks prior to the study) and supplements (starting at 1 weeks prior to the study) except acetaminophen or aspirin. This includes herbal supplements and vitamins.
    * Existing medical illnesses, such as heart disease, hypertension, cancer, rheumatological diseases, endocrinopathies or hormone replacement therapy, seizure disorders, severe obesity (BMI > 32 kg/m2),
    * Severe psychiatric disorders including bipolar disorder, schizophrenia, dementia and previous or current diagnosis of alcohol or substance abuse within the past year. Patients with depression of such severity as to warrant treatment with anti-depressants will be excluded.
    * Current abuse of illicit drugs or heavy ethanol use.
    * Pregnant women will be excluded because of radioactivity exposure from the SPECT scans.
    * Abnormal EKG
    * Abnormal CBC, blood chemistries, thyroid function tests, and HIV, ANA, RF and ESR tests.

    Contacts and Locations
    Please refer to this study by its ClinicalTrials.gov identifier: NCT00598585

    Contacts
    Contact: Erik Zuckerbraun, M.D. 310.668.8754 erikzuckerbraun@cdrewu.edu
    Contact: Christian Gastelum, M.D. 310.668.8754 christiangastelum@cdrewu.edu

    Locations
    United States, California
    Charles Drew University of Medicine and Science Recruiting
    Los Angeles, California, United States, 90059
    Contact: Erik Zuckerbraun, M.D. 310-668-8754 erzucker@cdrewu.edu
    Contact: Christian Gastelum, M.D. 310.668.8754 Christiangastelum@cdrewu.edu
    Principal Investigator: Ted C Friedman, M.D., Ph.D.
    Sponsors and Collaborators
    Charles Drew University of Medicine and Science
    Pfizer
    Investigators
    Principal Investigator: Ted C Friedman, M.D., Ph.D. Charles Drew University of Medicine and Science
  16. urbantravels

    urbantravels disjecta membra

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    Here is some more information about how clinical trials work, in case you would like to learn more.

    http://clinicaltrials.gov/ct2/info/understand

    I'd also add that the listed sponsors of the Viagra study are Drew University and Pfizer, so this study is not drawing upon NIH or other public funding.
  17. aruschima

    aruschima I know nothing

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    Please do not turn my words around, you understood very well what I meant ! I said it is a waste of time and our resources to do studies which arevery questionable. That this study is questionable is more than clear and you just confirmed this to me. I do not have time nor energy to go into detail, but will underline the questionable part just in short in the text you have provided. I am sure a real science knowledgeable person can provide you better and a indept answer. But I think you do not have to be a scientist, to see flaws with such studies. I still have no answer who Friedman really is?

    It is very clear to me that this study is addressing fatigued individuals diagnosed according to the CDC criteria, which show no biological abnormalities, but is not aimed at very sick patient of real ME/CFS sufferers, diagnosed by the CCC, and tested positive various biological abnormalities.

    I refer you to the ESME website where you can find all the suggested tests for biolological abnormalities in ME/CFS patients: http://esme-eu.com/immunology/testing-immunology-in-me-cfs-article319-189.html

    Largest research data base for ME/CFS
    http://www.meresearch.org.uk/information/researchdbase/index.html

    http://www.meresearch.org.uk/CGI_BIN/search/search.pl?Terms=brain

    http://www.name-us.org/ResearchPage...acts/NeuroArticles/deLange2005GrayMatAbst.pdf

    No further comment is needed ; already waisted enough of my precious energy on this .
  18. August59

    August59 Daughters High School Graduation

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    I would love to get into the Viagra study. I'm 2 years over the age limit though.

    Decreased blood flow to my brain (the one between my ears!), according to my Otoneurologist, was the main reason for my going deaf in my right ear. Actually his opinion is that decreased blood flow is the root contributor to my tinnitus and the co-contributor for my vertigo. The other contributor to vertigo is imbalance in sodium and potassium chamber/sac, which was more than likely controlled by blood flow.

    All of this happened to me 3 to 4 years ago and at that time he mentioned sildenafil citrate (Viagra) being studied or going to be studied for increasing blood flow in fine capillaries (?) of the brain. The consesus was that if this was validated it would have a major impact on vertigo and tinnutus treaments. He thought that part of my hearing could have been saved as well, but this was his opinion only.

    I'm speaking for myself only in that if I could get control of my vertigo I would be able to go back to work at least part time. I could spend a lot more quality time with my children. Hearing loss is permanent, so it is not coming back.

    I do not know if Dr. Freidman's study would verify what my otoneurologist was talking about or not. I do know that I did not have vertigo or tinnitus or hearing loss until after i became ill with ME/CFS. If Dr. Friedman's study leads to relief of my vertigo and tinnitus then I'm all for it. Even if XMRV is found to be the cause we are still going to have to have treatments to fix conditions that we have acquired while being stricken with ME/CFS. Viagra may very well turn out to be a "golden" treatment once XMRV has been treated and maybe before. Who knows!?!?!
  19. taniaaust1

    taniaaust1 Senior Member

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    I cant see them doing exercise testing to pick up any heart related ME/CFS issues. Most of us dont have heart issues actually diagnosed by our doctors or dementia as such (thou of cause our doctors do recognise we have memory issues). I cant see real ME/CFSers being excluded much based on what was said there.
    .........
    The info on study says the following..

    " Patients with depression of such severity as to warrant treatment with anti-depressants will be excluded."

    That part, thou a lot with ME/CFS of cause do get depressed with this illness as either illness itself or their suffering.. excluding the depression patient group, will help make sure that the non ME/CFS people that sometimes end up being diagnosed with CFS under the CDC defination but are actually just depressed, are far less likely to end up in this study. I personally believe that more CC CFS people should end up in this study due to not including ones on antidepressants, seeing they are using the bad CDC defination.

    The study is being supported by a drug company who seem to be taking the illness seriously rather then trying to put it down to mental health issue... I think this is a great shift in things that that a big drug company is wanting to experiement looking at things like low blood volume to brain.

    If the drug companies come to the party in seeing our illness as being more of a physical issue thing, that will bring A LOT more studies and funding of studies our way as after all, the drug companies arent short of money. Sure its about them wanting to be making more money and hence then them wanting to find something which will help us, but who cares if it may end up finding a drug to help us in some way.

    My brain has so not worked at times, I got stuck in a room not knowing what a door was! other times I forgot what a toaster was and how to make toast.... my brain is a serious issue and risk to me (including a safety risk as I end up leaving the stove on all the time).. so hurray to any study which may end up finding something to help this symptom.

    Yeah they are mistaken that this will cure us, and yeah they dont really understand this illness so are making huge assumptions which are wrong, but they may well find it brings some relief to us and that would then be of value. Maybe low blood flow DOES in fact affect our brains and just maybe, that part can be treated and relieved while that hunt goes on to find the underlaying cause to cure our illnes.

    Most serious drugs do have serious side effects, I'd expect something which has such a dramatic shift on the body such as increasing blood flow to probably have some serious side effects. How many serious drugs dont have any major side effects... not many at all

    If this study validated we have low blood flow to our brains and this fact then became accepted in the general community, this would bring our illness one step closer to be being seen as a "real" physical illness. Other safer drugs to look at increasing blood flow to brain would then be looked at too.
    .............

    Thank you to any drug company who is trying to take our illness seriously!
  20. Cort

    Cort Phoenix Rising Founder

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    Agreed! I know everyone wants THE answer but simply tracking down and validating the abnormalities will go a long way to legitimizing this disorder. If XMRV or some other pathogen doesn't work out I think it may be the ONLY way to go about doing it. Legitimizing the low blood flow to the brain finding will do it's part to legitimize CFS and to draw more money to it and more researchers and that, hopefully, will assist in really getting to the bottom of it - to do the studies that Aruschima is really looking for.....

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