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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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Search results

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    Prof Michael Sharpe of the PACE trial admits on twitter that ME & CFS should have been kept separate

    I mean CFS and ME are used differently and usually interchangeably in different places. What he means is what everyone has always known - that the PACE trial used a particular less stringent criteria (oxford) and not a more stringent one (Ramsey or others). ME and CFS or ME/CFS are often used...
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    Is ME as prevalent as they claim?

    Well ME is really underdiagnosed. In some countries it seems to hardly be recognized at all, and in those the diagnosis rate would be really low. Croatia might be one of those countries.
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    Information for doctor

    The clinician's guide on the National Academy of Medicine (formerly the Institute of Medicine) website (http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx) might be good.
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    GET experiences??

    I've done some GET, but the main person I did it under was pretty good. He knew a lot about pacing and not crashing, and had a lot of knowledge about how to manage CFS well. So, he didn't make me increase any exercise I did if I couldn't increase it without crashing or any negative consequences...
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    Nature: A reboot for CFS research 3rd January 2018

    Frances Collins announced that research funding would be raised to $15 million for 2017, but if you go onto the NIH's site (https://report.nih.gov/categorical_spending.aspx) it still shows the total funding in 2017 to be $8 million, for some reason. Maybe he announced that, but then they didn't...
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    New paper on ME in Psycho Research by Esther Crawley Jan 2018

    Well, it's hard because people don't care, they don't believe you, and most people don't take ME or ME patients as seriously as they should. Most doctors and researchers that don't actually specialise in ME don't take it very seriously. That's a fact.
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    New paper on ME in Psycho Research by Esther Crawley Jan 2018

    Also, I should point out that if you go onto this journal, and look at the articles, most of them are about physical conditions such as asthma, Parkinson's, psoriasis, heart disease, diabetes, hypertension, multiple sclerosis, and stroke. The name of the journal doesn't mean much.
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    Article Dec 23rd 2017: Aussie scientists discover CFS is real and may be treated with CCBlockers.

    Those are two different lines of research that are both in their early stages. Also CFS is totally different in symptoms to the depressive episode of Bipolar. I just don't think it's possible to put two very different lines of research together like that because they both feature calcium ions.
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    New paper on ME in Psycho Research by Esther Crawley Jan 2018

    Well the fact that I've met a number of doctors and researchers who think GET/CBT work, but also think ME is very much biological isn't a fact that I'm compromising on. Doctors can think that GET is effective and still think it is biological, because the ones who think GET is effective often...
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    New paper on ME in Psycho Research by Esther Crawley Jan 2018

    Except the people I've seen have actually done research into the biology of ME, so that doesn't really pan out with the people I've spoken to. Also, I don't see how it is in the interest of people trying to convince others that ME is psychosocial, to go around saying it is actually biological...
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    New paper on ME in Psycho Research by Esther Crawley Jan 2018

    I'm aware of the situation in the UK. I don't live in the UK, but one of the people I saw helped run the PACE trial, and the others have had links to clinicians and researchers in the UK. They've generally supported GET and CBT (despite this, a few have also done research into the biology of...
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    New paper on ME in Psycho Research by Esther Crawley Jan 2018

    In terms of whether most doctors generally enjoy seeing ME patients somewhat less than other patients, whether they are more likely to think there is a psychological component to ME than other conditions, whether they show much less empathy to ME patients, and whether they take ME less seriously...
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    Crawley to spread misinformation about ME to international group of paeds. in Sweden

    The fact that they've invited her doesn't necessarily mean they support her viewpoints. Also, often when scientists talk to other scientists they are a bit more conservative in what they say, claim or imply, because they know there's a greater likelihood of being challenged. Anyway, I don't...
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    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    That's very, very disturbing to hear. I've spoken to three people that have been involved in running three different inpatient clinics for ME, and none of them believed that ME was psychiatric, or that people should be forced to do any more exercise than they are able to do. So I think you...
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    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    I think having a doctor look over the final version and give some comments, at least, would be a good idea. That isn't actually how GET is applied in most respectable clinics nowadays, though. Most respectable clinicians now apply GET by making you slowly increase exercise, but only if you're...
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    Article Dec 23rd 2017: Aussie scientists discover CFS is real and may be treated with CCBlockers.

    I don't think their study(s) have been replicated, so I wouldn't jump to any conclusions about the veracity of their claims
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    Please can TeamPR help child threatened with 'intensive inpatient treatment' for failing to recover

    I think it would be better if an information pack was put together or had strong input from actual doctors or researchers (and multiple ones, so a single one doesn't just put down their personal opinion). I think a doctor would be able to tell if such an information pack was put together by lay...
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    Confused about Lyme

    The 80-90% figure quoted by Johns Hopkins refers to the fact that sometimes oral antibiotics don't work and intravenous antibiotics are needed, and that 10-20% of people go on to develop Post Treatment Lyme Disease Syndrome. You're taking their statistic out of context. Testing for Lyme...
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    New paper on ME in Psycho Research by Esther Crawley Jan 2018

    I think that many people with CFS assume much more of the medical establishment think CFS is psychiatric than actually do. Most have got in the habit of thinking that if someone supports GET/CBT, they must think CFS is psychiatric, which in most cases is untrue. Also, that quote from Hans...
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    Confused about Lyme

    That isn't true. Antibiotics are effective for Lyme disease in almost all cases, and about 20% go on to develop Post Treatment Lyme Disease Syndrome (which might be what you're thinking of). There isn't any evidence Lyme Bacteria are resistant to any of the antibiotics commonly used to treat...
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    New paper on ME in Psycho Research by Esther Crawley Jan 2018

    I mean I think they rotate their names mostly just because different people did most of the work in the study, so different people get first and second author. I think that Wessely, who is very irrelevant here, (I'm pretty sure he's a lot more irrelevant than everyone assumes he is) thinks that...
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    New paper on ME in Psycho Research by Esther Crawley Jan 2018

    Maybe, but that'd be a pretty sketchy way to interpret it, and I think most CFS researchers would pause before interpreting it that way. Also one study doesn't really mean much, you need more done by other people that show the same outcome, and there'd need to be more investigation into why...
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    New paper on ME in Psycho Research by Esther Crawley Jan 2018

    I mean I had a look at some articles in the journal, and there are articles about ischemic heart disease, psoriasis, diabetes, stroke, parkinson's disease, multiple sclerosis and asthma, so I don't think the choice of journal means too much. In fact, most of the articles in the journal seem to...
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    The Undetectable Infection

    I think that everyone needs to understand medicine and biology are a lot harder to understand than they seem. Not even the very best professors at top universities can understand and theorise correctly about these things unless it's with a lot of evidence, funding, replication by other people...
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    Jen Brea gives Esther Crawley some good advice.

    I think everyone should pay some attention to her first tweet though, that the issues we face are so much bigger than any one (or three, or five) researcher. When these researchers act the way they do and make the claims they do, it isn't them that's the problem. It's the broader scientific...
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    Confused about Lyme

    You're right, I didn't mention mention Late Stage Lyme Disease. Sorry. That still needs, though, the existence of an acute lyme disease that wasn't treated properly, and it isn't treated with long term antibiotics (short term, yes, long term, no). There needs to be a great deal of care not to...
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    New paper on ME in Psycho Research by Esther Crawley Jan 2018

    This is a fairly benign study that I'm not sure has even been replicated. It isn't clear at all how to interpret the study. The authors would support GET/CBT, but whether that means that they have the aim of showing that ME is psychosocial in every paper that they write (or that they all think...
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    New paper on ME in Psycho Research by Esther Crawley Jan 2018

    Whether that's the right way to interpret this study is totally unclear. Saying that the patients with fewer symptoms either don't have ME, or are particularly less severe isn't a claim that's really justified here. The study also didn't say that the treatment wasn't effective, just that it was...
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    Contribution to science of Regius Sir Simon Wessely: a thirty year retrospective

    He doesn't even do research on CFS anymore. Going on about specific (former, in this case) researchers isn't going to achieve anything - it has no effect on convincing the medical community of anything with CFS, and it has no effect on convincing the public of anything. It's a worthless...
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    Anyone tried Ritalin?

    I've tried ritalin and it didn't really help. I think stimulants in CFS are generally pretty ineffective, and even if they help with fatigue, they also make you crash faster. I don't think they're worth it.