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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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New PACE paper, more SMC spin.

jimells

Senior Member
Messages
2,009
Location
northern Maine
They pretend it's just Delayed-Onset Muscle Soreness - that thing where muscles ache a bit after exercising them. And they put their fingers in their ears any time someone mentions the 2-day CPET :rolleyes:

And for folks like me that don't have muscle pain - just awful migraines instead - we're just making it up, I suppose...
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
What we desperately need are high quality research studies that are aimed at producing a range of individual energy management programmes based on clinical presentation, stage, and severity of illness.

Hi @charles shepherd did you really mean to imply that we need research on self-management, but not research on the cause and the cure? My instinctive overwhelming-urge-to-lay-down already knows how to do self-management. I'd rather prefer research on how to recover...
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
We should thank the British psycho babble propaganda squad for their continued use of British press abuse in which to delight us, so frequently, and with the same tired old message (disease denial).

Thanks to them, we get to read that 'GE' reduces symptoms and that we are fearful of activity.
Of course we are then further disbelieved in society, further mocked, have our social situations (with family) worsened and may even find other doctors read their disinformation and believe it to be true.

I wonder if that is part of their GMC code of conduct? To use the press to present no science evidence, as 'evidence'. I doubt it. Still, their choice.

With endless evidence of disease denial (harmful therapy as beneficial being touted in the press), we can can collect all the newspaper clippings and give these to solicitors to help contact a medical lawyer when we sue for discrimination and damages, as the 'CFS' biomedical research comprehensively shows exercise capacity is reduced, and metabolic dysfunction is in place. Ergo, you cannot exercise your way back to health. Thus, the message is a lie, and the 'beneficial' therapy is a fraudulent claim to make, as no evidence exists to back up the claim!

Foolishly the psych lobby use the SMC and the British press as a launchpad for their extremist views. (Its' extremist to deny a potentially fatal disease, and to deny it outright as perpetuated as form of fear against activity - WTF?) whilst claiming patients are akin to animal rights protesters and it's safer to be in a war zone than be near a CFS sufferer - the inference of the readers of such trash.

Their core tactic is to blame a maligned disenfranchised impoverished group of disabled people (ME CFS patients) using the press, in which to dehumanize them and de-legtimise the patients claims to authentic disease states

Legal teams can now help ME CFS patients, at least those long term severely affected with many 'signs' of illness. So much research has come out in the last decade or so that shows ME CFS patients have many things organically wrong with them, that can be proven with tests. Proof of organic chronic fatigue and cellular damage, if extensively understood, can be obtained.

First step: Obtain your full medical records and get all GP notes, letters, hospital letters, test results and nursing notes if you have been an inpatient. You need to find evidence of repeat disbelief, or down right lies about your personal history (e.g. false accusations of parental abuse, work phobia, exercise phobia) that lead to you being neglected in society, because of the 'story' they concocted against you, due to discrimination and ME/CFS Phobia.

Second step: It's fundamental you have evidence of disinformation written about you, that mirrors disease denial (psych lobby), and then you can show you personally suffered damages, due to a form of pernicious discrimination found within the medical profession against people with ME CFS, due to these dreadful 'articles' that appear in the press and medical journals.

Don't forget, doctors are normal well meaning people. They don't go out to intentionally harm you, it's just that they are highly influenced by sources such as the psych lobby, that claim they are the de-facto place to come for information on ME CFS and are thus 'experts' in the field.

In reality, denying autonomic dysfunction, inflammation and infection makes no one an expert, but it does make them dangerous if the patient actually does have an underlying physical disease.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
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jimells

Senior Member
Messages
2,009
Location
northern Maine
Action for M.E. said:
Lead author Prof Trudie Chalder says, “Although the PACE trial results suggest that CBT and GET offer safe and effective treatment options for a majority of CFS patients, the improvements seen in the trial were moderate. By identifying the mechanisms whereby some patients benefit from treatment, we hope that this will allow better treatments to be developed, improved, or optimised.

Why does a patient organization promote CBT and GET with an extensive quote proclaiming how great the study is? It's like I'm reading a press release from the study authors.

Is this a patient organization, or is it something else?
 

Esther12

Senior Member
Messages
13,774

That was poor. Much worse than nothing.

Here's the NHS Choices article:
http://www.nhs.uk/news/2015/01January/Pages/Therapy-and-exercise-may-help-some-with-CFS.aspx

They relatively rigorously review medical papers that are in the media. Sometimes they spot useful things. Haven't read this one as of yet.

I thought that was decent in a limited sense. Seemed fair on the examination of mediators, but failed to note problems with bias in nonblinded trials and the fact that CBT failed to lead to improvements in any of their more objective measures of outcome.

Edit: related to the above - I thought that the Mail was worse than the Telegraph. It's exaggerated claims about th efficacy of treatments that are the key problem.
 
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Research 1st

Severe ME, POTS & MCAS.
Messages
768
1)

Ladies and gents, we can see the psych lobby continues to represent the high school drop out compared to its impressive American colleagues when it comes to CFS research.

Looking back it did alarm me to see that Prof Holgate chap from the MRC (MRC have a redaction on discussions on vaccines in National archives triggering ME - until 2074) apparently asked a certain super psychiatrist who he thought should be based on the 'CFS ME Collaborative' panel. Brilliant judgement there I thought! It also alarmed me more to see this information was apparently kept hidden by ME Assoc, AFME and only came to light from a FOIA request in the UK.

Q) Why did the UK ME charities hide this fact from the UK ME patients, that one of the most allegedly harmful people in ME history is contributing towards who gets to define their future treatment and their choices are redacted? Maybe that question answers itself. Don't you love a free and open society.



2)

I also saw that Professor Newtons' research colleague declared somewhere or another, that CFS has a new name, and it's called 'Persistant Physical Symptoms'. I looked this up and saw it is a putative F48.0 psychiatric designation alongside MUPS and PUPS.

Q) Why was it declared by an apparent member of the 'CFS/ME research collaborative' that PPS is ''the new name'' for CFS? Huh?

It's confusing to me that Professor Newton is 'research collaborating' with people who say ME CFS is a biopsychosocial disorder. The mind boggles on this as an sensible career choice, as we know ME isn't psych CFS (F48.0) as they have physical disorders noted as part of the condition that exceeds F48.0 classification, e.g. POTS. Why 'collaborate' with people who deny, what you research (Muscle dysfunction in CFS) as existing? So very bizarre.

So much harm has been done to the patients, you don't actually need to have a pathogen discovered in terms of suing the psych lobby. You just test for what long term chronic disease does to the human body over decades and with abnormal test results prove CBT and GE is useless to reverse the process . Yet reversal of CFS using CBT and GE is the claim of the BPS school of CFS (denies ME exists as organic disease), who are now most of the 'UK CFS/ME research collaborative'.

Perhaps in chances of determining what ME is, this is a selection choice akin to asking Mr Bean to win the Indy 500.
 
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Esther12

Senior Member
Messages
13,774
Its a shame that they didn't point out that PACE have rewritten the trial protocol and have mislead over recovery data whilst refusing to release the protocol defined recovery measures.

Right - these are the key, basic points that should be included in any comment on PACE.

Saying 'we're worried that the scientific evidence will make it look like our members are lazy' doesn't seem like the best media strategy to me.
 

Dolphin

Senior Member
Messages
17,567
I just searched cfs @bengoldacre on Twitter and found these two:

ben goldacre ‏@bengoldacre 24 Sep 2012
How a small, vindictive community of CFS activists prevent discussion of the disease @maxpemberton http://qako.me/PZZmLP

i.e.
Why few dare tackle the psychology of ME
The findings of a study into the role of viruses in ME will not be acceptable to some sufferers


https://twitter.com/bengoldacre

There have been dozens of people who have sent him tweets. Sometimes they were directly after he made the tweets above, sometimes at other stages.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Sounds like it might have been Vincent Deary. He's a CBT therapist who for many years worked with Trudie Chalder and Simon Wessely at KCL and has similar views.
Yeah - it's good to get names and links for this stuff if possible. I'd assume it's a reference to those Deary videos. (D beat me).
Thanks, both.

I work with someone who is a rabid anti-Semite. Not to mention others who are more casual racists. Not my choice. Wouldn't like to get tarred with that particular brush.
 

Esther12

Senior Member
Messages
13,774
That is some intense caution... I didn't even know Deary was a Jewish name. Nothing to do with my thinking he's a dick!