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    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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  1. TillyMoments

    ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in

    Ann was not in time for the trial and was just put on normal treatment. At the beginning she explained that she had glandular fever and had her Lymph nodes removed. So Ester could not find a single person/child to say how goon the LP was ever after four years? and was it the removal of the lymph...
  2. TillyMoments

    ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in

    Can anyone enlighten me in the BBC program the girl named Ann (not her real name) said that at the age of thirteen she had glandular fever and then had a secondary infection in the glands of her neck. These glands were taken out. My question a) if she had not had glands taken out and was put on...
  3. TillyMoments

    Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood

    The link is broken and just comes up with the pic below http://adc.bmj.com/content/early/2017/06/27/archdischild-2016-310622.full This link you have to ask permission Have NICE decided to have ME as Unexplained Medical Symptoms? Countess Mar asked about FII with regards to children and they...
  4. TillyMoments

    BBC Radio 4: Children with ME

    They had a lot more with Jane Colby and Dr Speight so it could have been stronger. SC wiped Jane out who has supported and helped out with and is one of the Mothers I have helped support so having SC comment has made me a little angry. But having the two girls feature in most of the program was...
  5. TillyMoments

    BBC interview with Ron Davis

    The program will be aired on Tuesday 27th June at 8pm http://www.bbc.co.uk/programmes/b08vyly5
  6. TillyMoments

    BBC interview with Ron Davis

    Just spoken to Nicola Dowling, who is doing a program with Matthew Hill from BBC and mentioned Ron's interview, they are doing a 45 min program. Have also spoken about the abuse the children and their parents receive. I believe that they are doing much better research into ME; asking how it...
  7. TillyMoments

    ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

    Nope couldn't get my head around the sillyness gone back to corner to rock in corner, dropped to the floor at: Somatic symptom disorder captured 15% of the patients with cancer or cardiovascular disease study group* When I have stopped rocking will have a look... will try to have a look
  8. TillyMoments

    ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

    Not in a position to comment; I took one look and fell to the floor with cross eyes. BDD? What? How? Going to rock in a corner for a while will be back when I have tried to understand why any medical person would be putting this idea forward.
  9. TillyMoments

    ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

    Done but have no idea what I am doing I'm not sure I want to know but have to ask what is and who put for ward bodily distress disorder?
  10. TillyMoments

    Important factors to consider when treating children with chronic fatigue syndrome.... Crawley et al

    Thank you Hutan, I so get where the boys are coming from as my son would say "they are too stupid to listen, so why try?" In the new Fitnet-NHS trial to be done on 700 kids with; well quite frankly I give up trying to guess what its on, it clearly states Prohibited detailed discussions but the...
  11. TillyMoments

    ****** !!!!!!!! ****************!!!!!!!!!!!!!!!! Junior version of PACE funded PI Dr Crawley

    AYME stated they would not help parents to gain information on PACE trial and quote Cochrane review stating the PACE trial was OK FitNet-NHS was allowed to continue due to children requesting treatment. Both SMILE and MAGENTA have been used to back that statement up but as far as I can tell no...
  12. TillyMoments

    Important factors to consider when treating children with chronic fatigue syndrome.... Crawley et al

    Well then I decided to have a further search http://adc.bmj.com/content/early/2015/10/09/archdischild-2015-308831.long I may go and have a scream at a wall a couple of times to really get my head around this. Research is hampered in children by grown ups covering up the real issues! Fluff a duck...
  13. TillyMoments

    Important factors to consider when treating children with chronic fatigue syndrome.... Crawley et al

    First problem Children with ME find stringing a sentence together hard enough and have all sorts of test pushed at them, I do not think a paper ticking exercise would be that helpful, or diary. Secondly children are still dismissed and their illness insignificant, they are hardly likely to tell...
  14. TillyMoments

    ****** !!!!!!!! ****************!!!!!!!!!!!!!!!! Junior version of PACE funded PI Dr Crawley

    On this Youtube she is quoting MAGENTA data? has anyone got hold of the data yet?
  15. TillyMoments

    Is anyone working on the Cochrane reviews issue after PACE debunking?

    FLUFF :-( I did find this and wondered if this could be used? http://bmjopenbeta.bmj.com/content/6/4/e010606.long
  16. TillyMoments

    Is anyone working on the Cochrane reviews issue after PACE debunking?

    Thank you that is helpful to understand the big picture of the landscape they have painted. I must say it feels as if we are fly's in a web. Can anyone see these threads as it seems that they stay one step ahead and in control? What sort of reputation do Cochrane have? Sorry to be so green to it...
  17. TillyMoments

    Is anyone working on the Cochrane reviews issue after PACE debunking?

    They seem to have put another review on and someone suggested that Peter White paid for it? Is that allowed? who actually pays for reviews anyhow was going to make a complaint about the review as they have not mentioned the PACE trial's questionable data and they also think there is good...
  18. TillyMoments

    Counter petition to the MEGA petition, brainstorming stage

    I have just joined I have been guilty of strangling on the grounds of those involved and there are many mothers like me who have. Crawley is the only one many can turn to to help with school now Dr Speight has been taken out. I hear on a daily basis how her work hams very young children and...