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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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  1. docsimsim

    FITNET’s Internet-Based Cognitive Behavioural Therapy Is Ineffective and May Impede Natural Recovery

    This is a comment from the parent of a 13 year old who was accepted to take part in the current NHS FITNET trial but was removed after 2 sessions 'for being too ill'! So yes it's business as usual: "We signed up for this my 13 year old daughter was put in the Skype group after 2 calls they...
  2. docsimsim

    NICE guideline for ME/CFS is unethical – Dr Diane O’Leary, Kennedy Institute of Ethics | 23 August 2

    But psychosomatic fatigue patients aren't harmed by CBT/GET, the worst that can happen is that it is of no benefit to them. ME patients are harmed by CBT/GET. That's why adequate selection is so important
  3. docsimsim

    NICE guideline for ME/CFS is unethical – Dr Diane O’Leary, Kennedy Institute of Ethics | 23 August 2

    @joshualevy. But if trials such as PACE's positive results on CBT/GET are due to overinflated recovery figures due to various forms of 'data massaging' (switching outcomes post hoc etc), then doesn't that render their conclusions null and void? I wonder if we were to go through all RCTs done on...
  4. docsimsim

    FITNET’s Internet-Based Cognitive Behavioural Therapy Is Ineffective and May Impede Natural Recovery

    TY, much appreciated. Have sent you a private convo message. Hope you don't mind. TC
  5. docsimsim

    FITNET’s Internet-Based Cognitive Behavioural Therapy Is Ineffective and May Impede Natural Recovery

    Hi. Is that table (where actometer is a predictor not an outcome ) from the Dutch trial? Tx
  6. docsimsim

    NICE guideline for ME/CFS is unethical – Dr Diane O’Leary, Kennedy Institute of Ethics | 23 August 2

    Thank you. So we need a placebo controlled double blind large-ish study to test the efficacy of CBT/GET. Et voilà, we already have that in the form of NICE, and the MRC/DWP funded it themselves. And it showd absence of efficacy or failed to prove presence of efficacy because it had hugely flawed...
  7. docsimsim

    NICE guideline for ME/CFS is unethical – Dr Diane O’Leary, Kennedy Institute of Ethics | 23 August 2

    Hi Jonathon. There are patient surveys carried out by several national ME associations involving 1000s of participants, showing that GET/CBT are ineffective and even harmful. Surely NICE should take this evidence on board? I'm not aware of any counter surveys involving large patient numbers...
  8. docsimsim

    NICE guideline for ME/CFS is unethical – Dr Diane O’Leary, Kennedy Institute of Ethics | 23 August 2

    Agree, I find it totally despairing that after decades of patients saying that they find CBT/GET at best ineffective and at worst harmful, we still have to 'pussy foot' around this issue. ME is a multisystemic neuro immune illness, it is due to physical pathology not psychology. Behavioural...
  9. docsimsim

    FITNET’s Internet-Based Cognitive Behavioural Therapy Is Ineffective and May Impede Natural Recovery

    No need to apologise. I'm often too unwell to post on here but very grateful to see this review shared here. As you know, as we speak £1 million of NHS funds is being spent to replicate a trial which has so many flaws it should never have gone ahead, let alone be replicated. It's just easy money...
  10. docsimsim

    FITNET’s Internet-Based Cognitive Behavioural Therapy Is Ineffective and May Impede Natural Recovery

    Thank you for sharing this here. Myself and Mark both very severe ME sufferers nearly killed ourselves writing this from our sick beds. Please share far and wide Ty Simin
  11. docsimsim

    Crawley: How to deal with anti-science BRS2017

    I think by abuse they mean 'any scrutiny of statements I make smearing a patient community'. Any convo you enter into with them they count as harassment/abuse. Been doing it for decades
  12. docsimsim

    Crawley: How to deal with anti-science BRS2017

    Exactly. Anyone who collaborates with a charlatan such as phil Parker who sells a snake oil treatment such as the lightening process, is by association (or even directly) of unsound scientific judgement
  13. docsimsim

    Crawley: How to deal with anti-science BRS2017

    This is an image of myself and fellow severe ME sufferers. We are all 90-100% bedbound. One died. I'm the one in the pink dress. I'm totally bedbound. Maybe prof EC can explain to me why she considers us more dangerous than cannon fire?
  14. docsimsim

    MEGA and PAG website update (March 29th 2017)

    Yes Caroline visited me twice, she did a wonderful job. They had been hoping to do a 2nd follow up visit (meaning 3 home visits altogether), but they ran out of funds. Really hope that the samples get used to the max by biomedical ME researchers, the more the merrier
  15. docsimsim

    MEGA and PAG website update (March 29th 2017)

    Fantastic news, power to the MEA biobank. This is the first ever piece of ME research that myself and several other bedbound ME sufferers in the UK had the chance to be part of thanks to the outreach nurse/researcher who made domiciliary visits. Let's hope funding is obtained to make use of...
  16. docsimsim

    FORWARD ME GROUP: Minutes for the meeting held at the House of Lords on December 7th 2016

    Do we know who's taking part in the teleconference? Apart from the PAG members? It's quite unclear, who will be chairing it? Are @charles shepherd/MEA taking part? Tx
  17. docsimsim

    New MEGA study website (30 November 2016)

    Thanks Charles, but judging by the fact that my question which I posted to the MEGA team (which is done via a form and thus the contents aren't in the public domain) last week has not even resulted in an acknowledgement of receipt, let alone a response, I doubt that my emailing them tonight...
  18. docsimsim

    New MEGA study website (30 November 2016)

    I submitted 2 questions 4-7 days ago and have yet had no response
  19. docsimsim

    New MEGA study website (30 November 2016)

    @charles shepherd these decisions/changes are being made too hastily, this is the first time I've heard of anonymisation of the PAG applicants. May I ask whose idea this was? You are asking people to raise their concerns about these last minute alterations via the (not public) MEGA contact...
  20. docsimsim

    New MEGA study website (30 November 2016)

    Yep a nice straight talking easy to follow summation of the situation.
  21. docsimsim

    New MEGA study website (30 November 2016)

    As far as I know, the SMC have a mailing list and have refused to add the medical advisor of our main national medical charity namely Dr shepherd to the list, this shows the extent of their corruption. For instance Jane Colby of the TYMES trust was not even briefed when asked to appear on BBC...
  22. docsimsim

    New MEGA study website (30 November 2016)

    It's CMRC that's the root of the problem. I never thought it was a good idea for patient organisations such as MEA and MERUK to join a group that included the likes of Peter White and Esther Crawley. No good can ever come out of collaborating with those who consider ME a somatisation disorder...
  23. docsimsim

    New MEGA study website (30 November 2016)

    @ @Jonathan Edwards, Is it not possible for the more reasonable CMRC members like your good self, MEA and MERUK to call for postponement of the funding application? We can't build a credible study on such faulty foundations, surely. Last month MEGA were at the stage of asking patients for...
  24. docsimsim

    New MEGA study website (30 November 2016)

    Yes MEGA from day 1 seemed to be an attempt to set up a rival biobank, filled with genral fatigue patients, to further conflate fatigue and ME/CFS. In other words businsss as usual as it's been since 1988 s
  25. docsimsim

    New MEGA study website (30 November 2016)

    Look forward to hearing what he thinks E We know that 25% of ME/CFS sufferers are house/bedbound and they are readily available for MEGA to tap into (if the inclination is there which I'm not convinced it is) via the patient advocacy groups set up for severe sufferers. So, meaningful numbers...