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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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KCL job ad: "to develop a novel CBT web based intervention to prevent the onset of chronic fatigue"

msf

Senior Member
Messages
3,650
I think Willow's right, we should all apply for the job, and if anyone turns out to have the right qualifications, we will have a Trojan Horse inside the system!

More seriously, the UK's stance on NHS is becoming more and more anachronistic - I think something needs to be done to stop this, because the way the system is set up makes it unlikely that change will come from within.
 

msf

Senior Member
Messages
3,650
There are still 2 months to go to the general election, how about an online campaign to get the NHS to review the NICE guidelines?
 

msf

Senior Member
Messages
3,650
Perhaps we could interest Dr Shephard and the ME association in it - rather than sending letters to individual MPs, as Dr Shephard has suggested, we could start an online campaign to pressure the parties (or at least one of them) into pledging that they will get the NHS to review the NICE guidelines, so that they are more in line with current opinion about ME in other developed countries.
 

Iquitos

Senior Member
Messages
513
Location
Colorado
That was one of my initial thoughts about it, and I even thought "oh, that's a good idea - they're going to teach people to carefully pace themselves in order to minimise the potential damage from acute onset ME." (I'd just woken up, and wasn't thinking clearly!)

Then I realised that it's most likely the opposite of that - they will probably teach patients to ignore and disregard their symptoms so a pattern of (theoretically alleged but discredited) symptom-focusing doesn't establish itself; and they will probably train patients to push-through their symptoms to avoid (theoretically alleged but discredited) deconditioning setting in.

So it could be a way of seriously damaging ME patients for the long-term, before the patient has a chance to understand their illness and implement an adaptive and protective response to the illness. If that is the case then it would be utterly devoid of morality, and it would be potentially deeply harmful, based upon the way we know that patients need to protect themselves from PEM especially in the early days of illness. For the patients who have ME or SEID rather than simply a spell of fatigue, such an approach will be dangerous and damaging.

Sorry, I didn't mean to have a rant, but this is a really annoying development, and it's more wasted money. It staggers me how these people seem to have an endless pot of money at their disposal every time they come up with another stupid idea based on discredited theories, hypotheses and research. Sigh.

"...how these people seem to have an endless pot of money at their disposal every time they come up with another stupid idea based on discredited theories, hypotheses and research."

UNUM, the world's worst disability insurance company, is a major source of this kind of money. UNUM bankrolled the King's College of Psychosomatic "Medicine". The way to keep the "research" money coming for the psychobabblers is to do "studies" of this kind. They are preaching to the converted so scientific rigor is not required. Indeed, it would be a hindrance since they already know the "answer" they are paying to get.

Yes, they are utterly devoid of morality. To them it's not a waste of money. It's an investment in their future.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Currently, the ball is in a different court regarding review of the NICE Guidelines - the NHS cannot review it, even if they wanted to, until the government asks them to do so, at the moment.

I did begin to suspect even during my degree in psychology, that nobody ever wanted to find anything out.

Having actual results would mean no further research required - the funding would dry up, they wouldn't be able to carry on pulling theories out of the sky to test, which would have led lead to "further research required" and so more funding...
 

msf

Senior Member
Messages
3,650
Thanks, Peggy-Sue, I wasn't sure about rules, but if that's true then the only way it's going to be changed is by putting pressure on the government, and what better time to do it than just before a general election?

The way I see it, the main problem with ME advocacy is PEM, or as the psychiatrists call it, pretending to be tired after exercise. So an online campaign seems to be the best bet. If we started a Facebook campaign, say, and got a significant proportion of UK citizens with ME or those caring for those with ME to post a message on it, pledging to vote for any party that promises to get the NHS to review the NICE guidelines.
 

msf

Senior Member
Messages
3,650
Oops, didn't finish that thought...if we did that, it should at least bring the issue to a wider audience, and if we get enough support it might even achieve what we are looking for.