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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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Search results

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    Is CFS really worse than Cancer?

    I'm sorry but who are you to question why the OP is on this forum? This forum isn't just for people with ME. You have no right to question why the OP wants to engage in conversations on ME especially considering that the OP previously had ME as a possible diagnosis. Maybe now he has learned more...
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    Jen Brea talking to GMT news

    The battery analogy is perfect for all the ignorants out there who don't know or care about ME. I wish people would stop nitpicking at her. Let's not forget that she is just human and doing this all by herself. Without any decent financial backing or support from a charity like other advocates...
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    Unrest London screenings update

    Lol :lol: I'm looking forward to his review of the film!
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    Do we know who Jennifer Brea's doctor is?

    I know and I 100% agree with everything you've said. My only worry was that because Jennifer Brea isn't active on here, these sorts of threads will lead to speculation. I wouldn't have said anything if she was active and involved in the conversation too.
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    Do we know who Jennifer Brea's doctor is?

    I hope you understand what I'm trying to say. I'm not saying that you shouldn't ask. I'm sure she'd reply if you messaged her. I'm just saying that I don't think it's very appropriate to ask about on a public forum. Especially if she's not completely open with it (I'm not sure how open she is...
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    Do we know who Jennifer Brea's doctor is?

    I understand wanting to know but I honestly don't think that you should delve too deep into specific people's medical treatments especially if they prefer not to talk about it. Not only that but you don't actually know how "healthy" she is. She could be very very ill. If you really want to...
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    I have got the diagnosis CFS, but..

    Wow that's great :thumbsup: thank you for sharing your story I'm curious about the immunological institute that made the misdiagnosis. Sounds very bad that they missed your psychosis and depression. It shouldn't be so hard to miss. Did the psychosis become prevalent later on or initially...
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    Justina Pelletier - kidnapped by Drs

    I think there's a much longer thread on here about her, if you're interested. You'd have to search for it though.
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    Video by Dr Myhill: Time to stop the abuse of CFS patients

    What other illnesses have a correlation to perfectionism though? Other than generalised anxiety and OCD? Is this something that specific to ME or does it occur in similar conditions. Even though you say that you don't think its causative there has to be a cause for there to be a correlation. I...
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    Video by Dr Myhill: Time to stop the abuse of CFS patients

    Well I do understand how bad the UK situation is. I've experienced it. My family actually considered going to her in the early stages but was told that I should go down the PACE route. I understand that she's not trying to self appoint herself as the leader of this movement but then again the...
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    Video by Dr Myhill: Time to stop the abuse of CFS patients

    Associating a personality type with a physical illness has no place in medicine and is lazy. Because they couldn't be asked, they decide to put perfectionist neurotic personality on the list of symptoms. This is the type of BS the CBT crew push. I'm just happy medical research is slowly moving...
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    Can orthodontic braces cause CFS?

    @Meruem If you had a bad allergic reaction to a chemical either on the braces or used when applying the braces then yes. You can also have an allergic reaction without contact dermatitis.
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    Video by Dr Myhill: Time to stop the abuse of CFS patients

    I know... but im pretty sure that's the only way to actually make progress in terms of changing perceptions on a wide scale. Harder than it sounds I guess..
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    Video by Dr Myhill: Time to stop the abuse of CFS patients

    Are there currently talks of a channel 4 documentary? That'd be amazing. I think even a 4 min buzzfeed video would help especially seeing as the treatment of PWME has a lot to do with gender inequality.
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    Video by Dr Myhill: Time to stop the abuse of CFS patients

    Maybe she isn't the correct person to be leading such a campaign. We need to have someone who is well known in English politics alongside someone who is a current medical researcher for ME. If we could get a popular MP who is well known in the Tory, Labour or even Lib Dem party then we wouldn't...
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    Turpentine for healing

    I paint occasionally and previously used turps but now I've stopped because it smells so bad. They are bad to inhale in a closed room so I don't see why they'd be okay for ingesting. I think any alternative medicine is okay as long as it's natural and used safely. Turpentine is not natural and...
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    Disabled claimants in UK to be told to get a job in 2 years or face a year's sanction.

    This wouldn't be an issue is the job market wasn't so saturated and employers actually wanted to hire and look after disabled people. Employers don't want people with chronic illness because they are seen as a risk in terms of taking sick leave and requiring accommodation to hours. Not to...
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    Countess of Mar visits the ME Biobank at the Royal Free Hospital in London (July 5th 2017)

    Wow this is amazing. Thank you for posting! I never knew this place existed. I would love to work there :redface: The UK makes so many steps backwards in regards to ME but I'm happy that there's a little glimmer of hope!
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    BBC1 tonight — Doctor in the House, featuring "chronic fatigue"

    Yes I came across this study when I was looking. I have a hard time believing that they haven't done a one year follow up on patients yet. They've been open for long enough. It's most likely that they didn't see any objective improvements in patients so not they need the help of a university to...
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    BBC1 tonight — Doctor in the House, featuring "chronic fatigue"

    Here are the studies that they site to prove that their treatments work http://www.theoptimumhealthclinic.com/research-overview/publications/ They don't have any actual research and what they do have is based off the conclusion that the patient "perceived" that they were better and this is...
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    BBC1 tonight — Doctor in the House, featuring "chronic fatigue"

    I think this thread is really telling. I wonder if patient claims of success are a big reason why these treatments are pushed so much. Even though overall most patients don't recover, the anecdotal recovery stories are pushed so much that it keeps it going. The most disturbing thing of this all...
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    BBC1 tonight — Doctor in the House, featuring "chronic fatigue"

    At the end of the day I'm sure we are all very happy that Nicola has improved at that she remains better. It's most likely that she either doesn't have ME or maybe her other illnesses such as depression had a stronger impact on her physical wellbeing than her ME ever did. I'd rather someone...
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    BBC1 tonight — Doctor in the House, featuring "chronic fatigue"

    This is disturbing. I was just told that a family friend watched it. I'd rather the BBC have nothing to do with ME than spread misconceptions. Very disappointing that they went straight to attributing her improvements to mindfulness. I haven't watched it and don't plan on it.
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    BBC1 tonight — Doctor in the House, featuring "chronic fatigue"

    I looked at the viewings over the past few Monday @9pm and last week was an election based show. This week they put planet earth on and next week it says that they're doing a show called eat well for less. I truly don't think they're gonna air it. I can understand them not wanting to replace...
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    BBC1 tonight — Doctor in the House, featuring "chronic fatigue"

    Interesting. I had a little look myself and I understand what you're saying. It would've aired this week if it was due to the election. They've ended most of the election shows and it wasn't shown this week? They aired planet earth yesterday during this show's slot which means it's very...
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    Have you had periods of being able to work?

    Like I said above I have to disagree. Imo this method won't work with retail and low skilled jobs that young people tend to work. If you disclose health issues that cause tiredness and weakness how can you they expect you to do a job that involves standing for 6+ hours. Occupational...
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    Have you had periods of being able to work?

    @Never Give Up I have to agree with @Hutan. I was diagnosed with ME is a teen and my education and social life was horribly interrupted and still is how many years later. My mum is very protective over my health even though I'm now an adult. She's the type that would tell me to tell my...
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    Have you had periods of being able to work?

    @Never Give Up What kind of work did you do? What kind of work would you recommend a young PWME prepare to do? I think the issue with young PWME compared to older people is that we may have interruptions in our education or we have limited work experience. So it's very hard for us to find job...
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    Have you had periods of being able to work?

    For me, my employers treated me badly and tried to suggest that I was doing my own thing whilst on sick leave. So I quit. Going through the firing process can take a very long time. It's good for ESA but if you're under investigations or have a hard to understand illness like ME then it can be...
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    positive ANA

    I mention lupus because the OP mentioned lupus so I assume that the OPs dr must have enough info that makes him assume it's lupus.