• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. C

    My 6yr old with ME/CFS on youtube

    Hi everyone, My 6yr old who was diagnosed 6mths ago with me/cfs tries to explain some of his symptoms in his own words(as you can tell)on youtube. He now thinks he's a movie star!! As some of you may know we are family with 4 out of 6 with me/cfs (3 children). Please feel free to comment and...
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    Cheney on transmission

    Is there anyone on here who has access to email dr cheney and ask his opinion on how he thinks it's spreading through families? This is what i'm most interested in having 2 children out of 4 with me/cfs from a very young age (age 8yrs), then myself getting me/cfs AFTER them at age 41yrs. Our...
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    Do Remissions Give Us Any Clue That This is Treatable?

    Michael do you have any evidence of the approx 10yr theory followed by 2 yrs later the worst of the illness develops. This is important to me as my 16yr old daughter is doing well at the moment (8.5yrs with me), i would hate to think this was the calm before the storm!!
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    The Family Member ME/CFS Prevalence Poll Take II

    Hi, would it be possible to read your blog, i'm very interested in this as we have 2 children with me/cfs (both aged 8yrs when they got it following different viruese), i actually became ill with me/cfs AFTER the children, our youngest 6yr old is also now with a paeditrician with similar...
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    Outrageous comment by Dr John Mellors - Expert in Infecious disease & HIV/AIDS

    The only way this could make some kind of sense to me is if fertility treatment i.e clomid or injections used to stimulate ovulation which i needed to get pregnant somehow infected me prior to getting symptoms of me/cfs. 2 of our children got me/cfs when they were 8 yrs, i got ill 2 yrs after...
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    Where is the UK coverage of the FDA/NIH paper???

    i'm not sure i've ever heard of anyone taking to him to be honest, he scared the life out of me & my daughter, but was honest enough to say he knew he came across as ubrupt sometimes & that he said he had little experience of dealing with children. I found the amount of time he spent talking...
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    Where is the UK coverage of the FDA/NIH paper???

    why did he put our 8 yr old daughter on amitriptyline and migraine tablets to be taken every day if he only believes it to be a mental illness? That was 8 yrs ago now, but he wrote some very stroppy letters to school making sure they understood that she was going into school purely to see her...
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    Where is the UK coverage of the FDA/NIH paper???

    Oh really Min, so it's not a good idea then? What is GMC please? I didn't mean to draw attention to the doctors for the wrong reasons, i was hoping the me/cfs doctors/neuros would be on their patients side and want to help us by getting this reaearch out in the open for all to see.
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    Where is the UK coverage of the FDA/NIH paper???

    Why haven't any of the so called ME/CFS doctors in the uk come out to talk about this & raise the profile in the media. Prof l Findley (neurologist) seems to take lots of opportunities to get on the radio to talk about me/cfs. There must be many other doctors some of us have seen/are seeing that...
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    Do you have scoliosis, double jointed, MVPS?Odd overlap- Connective Tissue Disorders?

    This is really interesting to me as our youngest child (6yrs) who we have been worried about lately, showing a few ME/CFS symptoms, has just been diagnosed with dypraxia and hypermobility syndrome. He is seeing a child psycologist on thurs to get a full assessment done. Our paeditrician told me...
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    Dyspraxia

    Hi, i wondered if anyone knows if there is any link between dyspraxia and me/cfs/xmrv? Our 6 yr old who we have been worried about lately was diagnosed with dyspraxia last night by his paeditrician.
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    Adrenaline surges?

    yes i know someone who has recovered to, that's what encouraged me to try it. I find now i still get a similar thing but it comes out more as anger/temper, it happens when the children have pushed me into complete exhaustion. I'm not a happy hyper person at the moment. We are actually dealing...
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    Adrenaline surges?

    That is the exact same thing that happened to me when i tried the lightning process therapy. I tried my best to explain it on this forum at the time, but you have just described it perfectly. I was forcing myself to exercise and trying to do exactly as i had been told. I felt i improved...
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    Mikovits interview states the FDA will confirm WPI findings in a Sept publication

    Does she mean she can correct the immune system for good and we are cured?????????
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    Xmrv not very pleasant news

    Other physicians may well of noticed it if their patients stayed around long enough to be followed up years later. How many of us stop seeing our consultants when they can't help us any further?
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    XMRV: could it go into remission on its own?

    How do you explain young children getting sudden ME from a gastric/resperatory viruses as it was in our two 8.5 yrs olds (they got ill 4 yrs apart) without being previously ill at all, i.e nothing out of the ordinary, fit and healthy to that point. I got ill after them both, although some of my...
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    is it best to keep mobile?

    Hi, i am suffering at the moment with very stiff joints especially in my arms and legs/ankles. I would like some advise on whether you think i should keep getting up for a short walk or rest my legs for a longer amount of time. As soon as i sit down they seem to stiffen up more so that when i...
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    15-Minute Test For Autism - Possible Implications

    speech and language, behavioural problems and one other which i've forgotten
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    XMRV stock picks . . .

    Yer it would be great to get shares in whatever company gets the number 1 drug to treat xmrv, who do you reckon it will be?
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    Virtual Protest March

    Serenity i'm with you on this one. I too don't want us to be seen along side AIDS which i think will be unavoidable in the press, as they will want to create as big as headline as possible. Those of us here who have children with me/cfs will understand. Unfortunately our 2 ill children have to...
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    Who has got worse as the years roll on?

    Yes absolutely. I learnt quite quickly with the children never to bother with doctors over every new symptom that came along, they'll put you on this drug or try to send you for physio etc to solve the problem, most of the time the symptom had moved on to something else by the time the follow...
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    Who has got worse as the years roll on?

    Thankyou taniaaust1 i've read through your blog. Not sure we want to hit any of those stages though!
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    Panic Attacks/Panic Disorder

    LP is the so called cure to me/cfs that isn't a cure, it stands for lightning process and it's a very expensive 3 day therapy.
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    Panic Attacks/Panic Disorder

    Hi, i was having bad anxiety attacks which i'm not sure are the same as panic attacks, i used to get them when i took either of my me./cfs children to hospital or on odd other stressful occasions. Went really hot/sweaty, very shakey and generally felt like i was going to pass out. My son's...
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    Who has got worse as the years roll on?

    The one's amongst you who have mentioned the "not catching anything" followed by "catching everything", how many years down the line of being ill did it seem to turn the other way i.e "catching everything"?
  26. C

    Who has got worse as the years roll on?

    Oh that's worrying ukxmrv, we also have the "get nothing" thing, the rest of the family catch normal viruses as you'd expect, and the 3 of us with me/cfs never catch any of them.
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    Who has got worse as the years roll on?

    Hi, i was wondering how many of you think or know you have got a lot worse as the years have gone by? If so, after how many years of having cfs/me did you start to deteriate? Did completely new symptoms start after a period of years?
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    Born with ME

    thanks for the advise Karin but we already do all those things. If it isn't early me/cfs symptoms i'm wondering if it's inattentive ADHD which has some similarities?
  29. C

    Born with ME

    Oh that sounds awlful Tia, sorry to hear that. Don't get me wrong my 2 children who were diagnosed when they were 8.5yrs have definately got me, they also have all the usual symptoms of muscle pain, brain fog etc etc etc, the anger and crying happened when they were over stimulated i.e...
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    Born with ME

    Hi Tia, do you not think you could of triggered me with a virus you got as a baby/young child? Why do you think you were born with it what were your baby symptoms to make you believe that? This is interesting to me as we have 4 children, 2 have had me since 8.5yrs & then got it after both of...