• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. A

    Time for Unrest: Why patients with ME are demanding justice article

    getting a little tired of people, usually my family and sometimes when I'm present saying that I have a mental illness, sometimes to strangers by way of introduction, then they make assumptions about you, regardless of the actual situation. Looking at this article it seems to be the same...
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    Is anyone else terrified of catching the flu?

    yes I have been following the information networks, I am going to buy vitamin C tablets, I have something going on at the moment which is stronger than the usual viruses that I get sometimes near constantly but it doesn't match the symptoms described of this pandemic virus strain. Some of...
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    Research update from Prof. Ron Davis (video!)

    I get the opposite, overly strong pulse which is rarely ever seeming 'normal', sometimes it makes it hard to go to sleep, and the rate is usually 10% + more than normal, 20 to 30% quite often, on rare occasions though its 75%+ faster, which I call 'POTS'. These things should be...
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    Research update from Prof. Ron Davis (video!)

    I don't know about this blood cell thing, I would like to see more experiments, but if it is true then it could explain why beta blocker specifically propanalol seems to help considerably for me, because it is supposed to lower the blood pressure which presumably involves the dilation of...
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    New paper on ME in Psycho Research by Esther Crawley Jan 2018

    I'm not sure how a machine learning is going to be better at pattern recognition than a normal scientist using conventional statistical methods and instinctive pattern finding and application of logic, could perhaps just be a marketing trick to get funding.
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    Prof, Gherardi interview showing that aluminium based vaccine adjuvants cause an ME/CFS illness

    I heard its because of genetic difference that the mechanism differs which is why 99% of the time or so the vaccine does not cause a problem, and the rest they have plausible deniability as to whether it was their fault, so its in the interest of their profits if everyone thinks it a...
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    How do you adjust?

    took about 15 monthes for me, 1st stage = confusion 2nd stage = depression / go a bit insane 3rd stage= try to work around it and keep living normally ( bad advice of doctors puts people on this path, they think they can cure it by determination / exercise etc ) 4th stage = suddenly...
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    Questions Answered by Dr. Naviaux

    Japanese are not allowed to import drugs they have to create their own version, that might be why they have suramin ? anyway have anyone asked him if this is true ? http://www.dailymail.co.uk/health/article-5133049/Aluminium-vaccines-cause-autism.html and if so whats the...
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    Bedside Chats with Ben: Ron Davis

    well ye, the process was already described its just that I thought they could already print these electrode things onto paper or at least somehow clean the original ones, and that the test would take 5 or 10 minutes each time, but actually he said it take an hour. so if they only have...
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    Dr Martin Lerner's abortive infection theory of ME/CFS

    remind us how we know there are consistent 'enterovirus' in me/cfs patients ? doesn't it only show in biopsy ?
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    Bedside Chats with Ben: Ron Davis

    from watching the video it seems there is more of a trouble producing fresh instrumentation than it seemed, an understandable difficulty with such advanced technology, with no surplus instrumentation its difficult to do the division of labour which seems needed in this situation
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    Bedside Chats with Ben: Ron Davis

    only got a 1/4 through but the thing im concerned about is its taking a long time to identify the molecule which was said to cause the observed effect in the new machine, this seems like a standard chemistry / molecular biology problem that an undergraduate would learn how to do, can it not...
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    The link between the first polio vaccine in 1934 and the first observed ME outbreak

    I saw something about vaccine recently actually, they said there is not the same standard of testing which is applied to regular drugs and the watchdog overseer group is corrupted, its hard to legally pursue anything if a vaccine happens to not be safe, I dont know if its all true but it...
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    :New paper 10th Nov: Brain chemistry study shows CFS and GWI as unique disorders

    sigh, daily mail people shouldn't write science articles unless they have a reasonable level of experience with it, trying to say it causes it is completely misleading
  15. A

    Does CFS F..k Up Your Immune System?

    yes it does, I have viruses so often its sometimes hard to define when it starts and stops, I feel normal then suddenly feel really ill and then it passes after an hour, also recently bacterial infections that a) wouldn't normally get before cfs b) for normal people it could heal...
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    Can the nervous system heal/reverse damage

    why do you think its nerve damage ? if you have consistent severe CFS then you will probably also have consistent pots, because when I had pots it always coincided with being 'bedbound', so relatively very ill, but it recovered in sync with other symptoms, even seen it come on and go...
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    Rituximab Trial - SMC Expert Opinion?

    hope they unblind it soon, I remembered it must be around now psychobabblers are going to be really annoyed since theres no way they can dispute such a test
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    Simon Wessely to undertake Mental Health Injustice announced at Tory Conference

    They are all hopeless, look how they handled the brexit thing, it will probably take them 10 years to get it done if it keeps going like it is, people have said if it was a private company it would have been done within 6 monthes, it shows they have little interest to work for the peoples...
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    ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in

    you have to ask why does this person keep getting featured in prominent TV and newspaper slots about the subject, what has she done to be considered the 'foremost expert' and why its always just her or simon wessely ? as charles said he was contacted but then 'something' made them drop it...
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    New PET study planned in Japan

    I notice it seems to be just this one researcher from there, why he always focus on the brain ? is that his specialty area of expertise ? or do they subscribe to psycho-social model in japan ? its interesting how they have good resources, engineering and high tech output and the highest...
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    We are the Establishment & it's plainly evident that we don't give a rat's arse about ME

    I wonder what causes people to act like this ( psych lobby ), it seems to go beyond mere differences of belief, is it an aspect of modern western society or did such problems exist in victorian britain too ? seems like people have lost a sense of moral obligation and theres no accountability...
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    For those who attend the UK's Fatigue Clinics: what your therapist is told/believes

    90% of them just try to deceive you, its sad, the other 10% are well meaning but they are not able to help so they end up getting annoyed eventually, even outside of CFS they will try and trick you, I said I thought I might have had a kidney infection as per the symptom description on the...
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    Why are doctors and patients still at war over M.E.? How the best treatment for the debilitating con

    they are really sensationalist, I think the health articles they make are silly and meaningless like a new one everyday which contradicts the previous, also don't care for the vapid fashion / celebrity things, but apart from that it seems ok, they do seem to hate everyone that is different...
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    Cognitive and behavioral coping in people with CFS: An exploratory study...

    I don't get why its part of cfs research, its an extremely common psychological problem to the point where its almost a factor of everyday life, and psychology people already know how to approach it or at least they should if they studied for their qualifications properly, are they...
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    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    I did not see every section of the talk, was there any mention of a plan to mass produce the nano needle thing ? could patients buy one to prove to disbelievers there is something fundamentally different ? or would it be useless without a cell seperation machine and various other laboratory...
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    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    I particularly liked these speakers Jonas Bergquist Alan Light Baldomero Olivera Mario Capecchi Mark Davis The information that stood out to me as important was that there is a company trying to manufacture suramin for our purposes + autism treatment but it will take maybe a year or so ...
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    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    could the first speaker elaborate on what he means by nutritional as a means of treatment ? everyones diet is different.
  28. A

    Physiological measures in participants with chronic fatigue syndrome, multiple sclerosis and healthy

    similar been done before, they could try measuring relevant by-products / metabolites after 30 minutes of exercise or try using a high grade thermal camera to look at heat generation / distribution / circulation etc
  29. A

    New breakthrough research: video games to activate people with ME

    so they literally want us to do this and think it will make us better ?
  30. A

    What are your worst symptoms?

    depends because I have phases but in a sustained crash what tend to happen which I hate is what I call energy level bottoming out where I lose a lot of motivation and ability to concentrate, I feel like doing any substantial activity like watching a film is trying to use something which I...