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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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News about the Spanish study in Institut Ferran from Barcelona, Spain .
Start of study: Postponed until further notice because of difficulties to reproduce the technique used in the original study.
Deteccin de la presencia del retrovirus XMRV en pacientes con Sndrome de Fatiga Crnica grave (criterios Fukuda y Canadienses positivos -certificados por un mdico experto-, impacto neurocognitivo demostrable y pruebas de esfuerzo test-retest (24h) con cada superior al 25% en la segunda y un mnimo de una alteracin analtica de perfil inmune), y poblacin sana.
Seleccin de 100 pacientes y 100 controles sanos. Estudio sin costo para el paciente. Los resultados de la analtica sern puestos a disposicin del paciente.
Fase: seleccin de candidatos.
Inicio del estudio: aplazado hasta nuevo aviso por dificultades de reproduccin de la tcnica utilizada en el estudio original.
News about the Spanish study in Institut Ferran from Barcelona, Spain .
Start of study: Postponed until further notice because of difficulties to reproduce the technique used in the original study.
I,ve always thought that ME should be called mitochondrial encephalopathy-----the symptoms of MLAS, a known mitochondrial disorde,r and ME/CFS are virtually the same, virus gets in --immune system activated hpa axis down mitochondrial damage immune system permanently swiched on hpa axis stays down complete autonomic deregulation encephalopathy-------it certainly explains the whole range of symptoms
I'll admit that I thought, "Ho hum." I thought the library would be one of those disorderly, hard-to-navigate mish-mashes that are often connected to Yahoo groups. But when I visited... Wow! It's great. A really good easy-to-use resource.
I'll admit that I thought, "Ho hum." I thought the library would be one of those disorderly, hard-to-navigate mish-mashes that are often connected to Yahoo groups. But when I visited... Wow! It's great. A really good easy-to-use resource.
I've scanned the board - how do I get access to the "library"?
Exactly. "You're not in pain, you just feel like you're in pain." (*whoa, brain cramp*)
I don't think it is just an infelicitous use of language by Lloyd. I think I'm finally starting to comprehend where Wessely et al may be coming from: CFS is a virus that causes brain damage that makes you feel like you're sick for years. But you're not, so you have to learn to ignore your feelings via CBT and GET. Am I getting it?
Thats a good one . A bit like teaching healthy people to walk over hot coals or a load of smashed glass! Dont scream as you 're doing it just "put it to the back of your mind"!
Just a thought, flex, but I think the comment fresh eyes made is relevant to the claims made by the promoters of the Lightning Process. I've heard from someone with M.E. who was told at an ESA interview that she can work if she undertakes the three day Lightning Process. So, the DWP are promoting it now.
Isnt it true that Eztehr Ranzon claims her daughter suffering from ME for 15 years was cured in three days via the Lightening Procees and Ranzon is now patron of an "ME charity". She is also invilved in a lot of Infomercials on TV and she wants to be an MP in Luton.
What is is they say, "where there's muck there's brass". To bad that you have to ride on the backs of the sick to get notoriety. Wasn't she supposed to be the consumers champion?
I've met Esther Rantzen, she's not a pleasant woman and was especially odious to a wonderful woman who had organised a fundraiser for AYME and treated her like snot. She even told me off for fidgeting in a photoshoot, I told her I was trying not to pass out (we were standing, I was ill and trying to run my own fundraising project at the time). She was awful, rude, fake and superficial.
Esther,
Why would you think that there are any problems replicating WIP's work (other than deliberate attempts to pretend so).
The IC research wasn't anywhere near an attempt to replicate.
Do you know about something else? If so , please make this clear.
I don't think that it is fair or reasonable to keep putting a negative slant on things or to distort the reasoning process by making these statements when they are untrue - unless of course you have any proof.
Esther,
Why would you think that there are any problems replicating WIP's work (other than deliberate attempts to pretend so).
The IC research wasn't anywhere near an attempt to replicate.
Do you know about something else? If so , please make this clear.
I don't think that it is fair or reasonable to keep putting a negative slant on things or to distort the reasoning process by making these statements when they are untrue - unless of course you have any proof.