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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. O

    Midodrine vs Droxidopa vs Mestinon

    Hi Valentijn, I'm considering trying Yohimbe. Can you tell what dosage you take, and what brand you use? I've been reading that some brands are far less effective than others. Thanks
  2. O

    Patients should be pushier with GPs, says watchdog chairman

    Is this guy serious? If you have to get someone's permission to do something (in this case both NICE and your doctor) then it isn't a genuine right. There is nothing wrong with being "pushy" if you're being denied access to a service that you've already been forced to pay for. However, being...
  3. O

    House of Lords debates the PACE Trial | verbatim report and YouTube

    I suspect his views were fixed long before Lady Mar initiated this debate. He comes across as an old school doctor who thinks patients should know their place and not get involved in debates about medical issues. I definitely wouldn't see him as a natural ally. I've never warmed to the guy. I...
  4. O

    Strattera (atomoxetine)

    I finally decided to bite the bullet and buy some Strattera from an online pharmacy (www.emedoutlet.com in case anyone's interested). I had to buy the 60mg tablets because they're much cheaper than the 10mg ones. In fact the price/mg difference is ridiculous. So I'll have to find a way of...
  5. O

    Strattera (atomoxetine)

    Thanks. That sounds very encouraging. Of all the symptoms I have, mental fatigue is the one that has by far the biggest negative effect on my quality of life. If that could be alleviated then it would be a huge step forward. So I'm very tempted to try this drug speculatively. It seems safe...
  6. O

    Strattera (atomoxetine)

    Hi Valentijn, Can you give us an update on how you're doing on Strattera? I'm wondering whether the improvements you noticed have been maintained in the long term. Thanks
  7. O

    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    You're totally wrong. The "right to purchase" does not exist, at least not from a patient's perspective. In most parts of the developed world draconian laws have been put in place to prevent patients from obtaining most medications without a doctor's prescription. Far from being perverse...
  8. O

    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    This thread is going round in circles. We all know that taking prescription drugs involves a degree of risk, and that taking drugs off-label is (as a general rule) even riskier. That's a given. The real issue is whether or not the risk is worth it, and surely that's a decision that can only be...
  9. O

    BMJ JNN&P: Neuropsychiatry: The function of ‘functional’: a mixed methods investigation

    Disgusting. Anybody who still believes that Wessely has significantly changed his position (after having read his recent correspondence with Lady mar) needs to read this paper.
  10. O

    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    IVI, please spare me the fatuous links. I'm perfectly capable of looking up the dictionary definition of "engage" on my own, if I need to do so (which I don't). What I'd really like to know is what you mean by "engage" in the context of ME advocacy. But I suspect you already knew that. I note...
  11. O

    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    Eh? So let me get this straight. You're saying that in order to "engage" (whatever that means) with the people who can effect changes in political, research and clinical attitudes that would advance the interests of M.E/CFS patients, we have to pretend to support the status quo. That makes no...
  12. O

    SBM: Kogelnik, Rituximab and CFS: Jumping the gun

    It's weird isn't it. Many of the difficulties we face with the medical profession stem directly from the prescription system. It's inexplicable to me that any patient would support a system that deliberately restricts our freedom. It just doesn't make any sense. The term 'turkeys voting for...
  13. O

    piracetam for cognitive stuff and circulation?

    Has anyone here tried Noopept? According to the Wikipedia page it's 1000 times stronger than Piracetam. link Of course the Wikipedia entry might have been created by the manufacturer. But still, it looks interesting,
  14. O

    PACE Trial: Freedom of Information Act 2000 (FOIA) Decision notice - minutes of meetings (refusal)

    Hmm. Not good. Not good at all. What I find most disturbing about this ruling is the assertion that a "patient representative group" requested that the minutes should not be disclosed. Does anyone know who this mysterious group is, and the process by which they were chosen to represent us...
  15. O

    Wessely honoured with a knighthood for his work for GWS and ME

    Valentijn, Thanks for posting this information. It's certainly given me a lot to think about. I'll give a full reply when I've had a chance to do some background reading.
  16. O

    Wessely honoured with a knighthood for his work for GWS and ME

    Hi Valentijn, can you expand on this a bit. I also suffer from OI symptoms and the only treatments that I know of are drugs such as midodrine which my GP refuses to prescribe, and which I haven't (yet) been able to purchase on the internet.
  17. O

    Wessely honoured with a knighthood for his work for GWS and ME

    I totally agree. In many ways the treatment of GWS sufferers has been even more scandalous than the treatment we've received. As an aside, when you first joined this forum, I was dismayed at how naive you appeared to be regarding Simon Wessely. It's refreshing to note that you now appear to be...
  18. O

    Wessely honoured with a knighthood for his work for GWS and ME

    I just shrugged my shoulders when I heard this news. I mean does anyone still take the honours system seriously? You only have to look at the types of people who typically get given honours to realise what a joke it is - failed/has been politicians, shady businessman who have donated money to a...
  19. O

    Lady Mar writes to Prof Wessely

    Hmm. At first glance, this statement appears to be a significant shift in his position, but on further inspection, it turns out to be typical Wessely sophistry. Wessely is on record as saying that ME should be regarded as a 'Functional Somatic Syndrome' which is defined (by him) as follows...
  20. O

    Professor Simon Wessely says he is misunderstood

    Eh? What on earth do you mean by that? I get the impression they're already throwing everything they've got at us, and it's not working. If anything, it's just increasing our resolve. I think we've got them rattled. Hijacking an organisation like the SMC to further their own narrow agenda...
  21. O

    Negative publicity on PWME - the motive?

    IVI, If you wish to respond to my posts then I'd appreciate it if you didn't chop my text up into tiny little out of context sections before replying. The paragraphs I wrote were intended to support one another, and should be treated as a single unit. It's a habit that leads to very disjointed...
  22. O

    Negative publicity on PWME - the motive?

    Meaningful negotiation only even happens when both sides accept that change is necessary. And I don't see much evidence that doctors want to change a system that gives them a great deal of power, and patients very little. You need to learn the lessons of history. Almost every significant...
  23. O

    Simon Wessely wins prize for "Standing Up For Science."

    I agree with your first paragraph. And that's why I believe the softly softly approach of constructive engagement advocated by IVI is never going to work on its own. Such an approach can only be effective when you're dealing with opponents who are prepared to be intellectually honest and engage...
  24. O

    Simon Wessely wins prize for "Standing Up For Science."

    I think asking Wessely for proof that he's received threatening emails is unwise (and may even be a deliberate trap) because the emails he refers to are probably genuine. It's simply a numbers game. This is a guy who has damaged the lives of literally millions of people around the world for...
  25. O

    All gone wrong on the anti candida diet - HELP NEEDED.

    The only thing that's outrageous is that you were forced to resort to such tactics in order to gain access to a service that you've already paid for. I'd have no qualms whatsoever about lying to my GP if it helped me to achieve my objectives. I don't regard her as being on my side. I regard her...
  26. O

    Gluten: Bad for us ALL !

    I agree. I find that explanation fairly plausible. However, I think it's unlikely that more than a tiny percentage of ME sufferers have undiagnosed classic coeliac disease (by "classic" coeliac disease I mean the type that can be definitively diagnosed by taking a gut biopsy). Even taking into...
  27. O

    Procuring AVs when based in the UK?

    Last time I checked, they charged a fixed rate of $25 for shipping anywhere in the world. It's quite a lot but you pay the same regardless of how much you order. In my experience, the very low cost of most of their drugs generally compensates for the relatively high cost of their shipping, as...
  28. O

    Procuring AVs when based in the UK?

    I'm not sure what you mean by "country restrictions". Are you suggesting that your ISP might be deliberately blocking the site on the instructions of your government? If that's the case you could try using a proxy service. Anyway, I personally wouldn't use MagicPharma unless I had absolutely...
  29. O

    Improving heaps!

    Hi Gavman, I'm a little bit confused. Am I right in assuming that you have been taking the SAM-e precursors for two months, but prior to that you were taking actual SAM-e? If that's the case, then how long were you taking the SAM-e for, and how long did it take before you noticed a beneficial...
  30. O

    Improving heaps!

    Hi Gavman, your thread caught my eye as there are very few treatments available that lead to an improvement, even for a subset of patients. I notice you're taking SAM-e precusors instead of SAM-e itself. Is there a reason for that? Cost maybe?