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

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    Anyone contacted their local newspaper about CFS?

    Here in the UK I have tried many times to interest the national and local press in a variety of ME/CFS topics and have never even received an acknowledgment. It would seem generally that the major (only?) opportunity to express an opinion is by responding in the newspaper's online 'Comments'...
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    UK - Author gives 10 million for MS Research Centre in Scotland

    What a magnificent gesture. Perhaps there might be a few beneficial research 'spin-offs' for ME? I live in hope!
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    Come in the UK's media,your time has come !

    As ever, with the UK media, with great difficulty. There does seem a reluctance in the UK press to publish any meaningful response. My experience is that an article, if it's published, invariably raises a mass of comment from around the world that is invariably ignored. What the whole ME...
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    xmrv + , how will we be treated by ordanary folks

    I think that we can anticipate that the media would go for maximum shock/horror to start with and when the dust settles a bit start publishing the reality.
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    Anxiety in ME-patients (BECAUSE of the ME, not the other way around.)

    Hello Mya - Be kinder to yourself!:Retro smile: I share your heightened sensitivity to smells, for me it's part of my ME. If something smells unpleasant it's only natural to want to remove it, so you do, and this is a perfectly understandable reaction. How long do you think someone with a...
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    When Friends Disappear During a Health Crisis

    Unfortunately, losing the ability to be 'part of the crowd' is something that most if us have to deal with and accept. Difficult? Of course it is, but it does get easier (or perhaps less difficult would be a better way of putting it).
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    Let's look at the facts in light of actions by the cdc / uk shrinks re: Cfids/me

    Apologies for being obtuse but......precisely what/which document is beng buried?
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    Global Campaign to ban blood donations from people with ME

    Hi All - I telephoned the UK Blood Donor people today. After being on hold for a while was informed that they are NOT accepting blood from ME/CFS sufferers until they are cured. Looks like they'll have a long wait. Given the responses of some other countries this seems irresponsible to me.
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    Have You Tried GET/GAT or Exercise on Prescription?

    Thanks for inserting links
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    Have You Tried GET/GAT or Exercise on Prescription?

    Hi All - UK's Action for ME are currently running a survey to establish the effectiveness of above treatments. The questionnaire refers specifically to the therapies in the heading above and does not include CBT. Apparently there are significant variations between the outcomes reported by the...
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    Another CDC/CFS website change

    Within V99's quote lies one of the single most major problems for ME, CFS, ME/CFS sufferers worldwide. The dismissive response from CDC that in the UK CFS is merely another name for ME implies that they are one and the same thing. I firmly believe, as does my GP and many others of course, that...
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    My New YouTube Video - CFS Epidemics

    A superb presentation that really gets the message across.
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    Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Populat

    In my opinion, for what it's worth - The biggest problem arises from ME and CFS frequently being touted as the same thing. In fact there has been a marked swing towards prioritising CFS with ME frequently tagged on as an afterthought. ME is a condition of which CF is only one of many symptoms...
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    Lightning Process to be Evaluated in Research Study on Children

    Apologies, having one of those on and off days. Can someone please clarify BS forum?
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    Blue cross of new york refuses CFS diagnosis and treatment.

    In my opinion, the UK government do know but are content to go with the flow, any flow, to reduce the massive benefit payments bill, for now at least. The clearly biased medical assessments, despite the nuerous complaints of how they are implemented, and the government's enthusiasm to continue...
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    Blue cross of new york refuses CFS diagnosis and treatment.

    Not specific to this thread (Blue Shield) and I've only skimmed it so far, but it contains a lot of interesting information re attitudes of many insurance companies to ME/CFS and how they will try to avoid paying out and are clearly doing their best to 'stack the cards' against sufferers...
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    Olympic Swimmer

    'Power through it'? Sounds like the LP et al. Has anyone told her that a bit of CBT/GET will have her up and running (swimming) again in to time at all?:winking:
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    Lightning Process to be Evaluated in Research Study on Children

    CRB definition of vulnerable - "Vulnerable adult means a person aged 18 or over who has one or more of the following conditions: * A substantial learning or physical difficulty A physical or mental illness/mental disorder, including alcohol or drug addiction * Significant reduction in mental...
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    Lightning Process to be Evaluated in Research Study on Children

    "All practitioners have either been Criminal Records Bureau (CRB) checked or are undergoing the checks." Undergoing checks? This would imply that there are some LP practitioners that don't have CRB approval. As far as I am aware, it is illegal to work with children in a training context until...
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    If you don't believe in conspiracy theories...

    Conspiracy theory or not, here in the UK there is a definite reluctance to acknowledge physical causes of ME, whilst at the same time there is plenty of support for psychologically based reasons and, subsequently, lack of appropriate research and treatment. Personally, I believe that the current...
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    Probably of More Interest to UK members......

    ....but there is a specific reference to ME from a benefits aspect. Edit: Apologies - the ME reference is inside the newspaper and you can only view it online by paying, (cheeky people!) but at least it is helping raise awareness. Basically, an ME sufferer was deemed fit for work by ATOS...
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    Benefits and risks of long-term sleep meds

    I've been on a low dose (7mg) of Zopiclone for 18-24 months and have recently cut it back to half a tablet. Not quality sleep, and usually 5 hours, 6 max, but hey, it's sleep sort of! I read somewhere about patient doses of up to 35mg:Retro eek: If you do take half a tablet be sure to get it...
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    Measures Taken by 11 European Countries for Multiple Chemical Sensitivity (MCS)

    Some household cleaners cause a burning sensation in my mouth and swelling of the lips that is extremely unpleasant and the same effects with some of my partners hand creams, but only sometimes. Impossible to know when/if it will affect me so they are now 'banned' substances. Same thing can...
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    UK IMPORTANT!!! - APPG for ME to reform, they need our help. (Parliament)

    I've emailed my MP at Westminster and his local surgery (wonder if he's signed up to do ATOS medicals yet:Retro confused:). He hasn't responded yet, but I'm sure that he will be calling on me personally to offer his support:Retro smile:
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    BBC - 'I'm worried about benefit cuts', says ME sufferer

    This whole exercise is about cutting government spending on benefits, irrespective of any individuals true capability. Unfortunately, there are far too many working people, and fit people looking for work, that are more than happy to lump all of the genuinely sick in with the scroungers...
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    Okay so can we PLEASE change the STUPID name to something else NOW???

    Mmmm...Not sure about this one, inevitably some will read it as Whip Me Disease :Retro biggrin:(WMD?) Weapon of Mass Destruction? Certainly true in some respects! Seriously, the sooner the CFS reference is eliminated the better. If I mention CFS to a non-sufferer I can almost see the 'thinks...
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    Harvey and Wessely's (bio)psychosocial model versus a bio(psychosocial) model

    Mmm....Does anyone know how these red dots should be positioned? What size dots? What shade of red? Will any size handkerchief do? Where exactly should this be placed under the mattress? Surely a white sheet covered in red spots would be much more effective? How about if I can catch...
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    Harvey and Wessely's (bio)psychosocial model versus a bio(psychosocial) model

    Luvly response, Mithriel, (should that perhaps be Mythriel!) I haven't laughed so much for a long time! Dolphin - I think that we are in agreement. Given my current cognitive state, who would know.:Retro biggrin: What the hell! Love and hugs all round:smiley-hug: