Claim (PACE) ME/CFS cured by changing mind on way out HealthInsightUK Blog post by Jerome Burne (2019)

I did read a wee bit about this a long while ago ( the Maryanne Demasi fiasco). All cause mortality seems to have been forgotten about.
Only of use if you had had a heart attack previously. There was also a difference if you were female.
There is also the small issue that cholesterol doesn't seem to be the culprit it was painted to be, especially if you are older. The whole correlation/ causation thing again...
 
Esther12 said:
If awareness of the problems with PACE is being spread I'd put up with 'tired all the time' tbh!
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Absolutely. The crucial thing is for more people to become increasingly aware of the reality of ME/CFS, and the surreality of PACE etc. It would be extremely unrealistic to expect most people to understand the fine detail ... and the point is they do not need to! We are getting to the point where the general public simply need to understand the broad brush strokes, which is progress I think.
 
Arnie Pye said:
Twitter response from Zoe Harcombe on the Jerome Burne article about ME/CFS. Annoyingly, she refers to "chronic fatigue", as do several people who responded to her tweet.
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Esther12 said:
If awareness of the problems with PACE is being spread I'd put up with 'tired all the time' tbh!
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Barry said:
Absolutely. The crucial thing is for more people to become increasingly aware of the reality of ME/CFS, and the surreality of PACE etc. It would be extremely unrealistic to expect most people to understand the fine detail ... and the point is they do not need to! We are getting to the point where the general public simply need to understand the broad brush strokes, which is progress I think.
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Excellent that she has read the Jerome Burne piece, & I agree with you @Esther12 & @Barry, that awareness is the key thing. However none of the responders to her tweet seem to have read the article, and are mainly in the 'I've got CF & I'm so tired at the end of a day's work it's awful'/ 'I had CF after glandular fever & changed my diet & now i'm fine', ie 'tiredness can be cured with diet' camp.... which of course is exactly what you'd expect people to think about 'chronic fatigue'.

And that's the other side of 'all awareness is good'.
I agree that we cant expect people to understand the finer points, but honestly in my experience things were better 17yrs ago when nobody i know knew anything about ME - at least you stood a good chance of explaining things accurately to them.
Now people think they know about it but what they know is wrong. The increase in sufferers on, for example, the MEA facebook page, referring to themselves as having CF, has grown exponentially in the last 5yrs. Some because they're shortening CFS without realising the problems with that, but most genuinely seem to think that ME/CFS & CF are the same thing. They are tired all the time, & they think that is ME because that's what they've been told, and the CF words are even used in advertisments for skincare now!
I don't think awareness of the wrong thing is helpful but i really don't know what there is to be done about it, i despair about that aspect sometimes.

However, the fact that Zoe Harcombe has read the article & is now somewhat briefed re PACE is great, and one hopes that her followers might click through & actually read the article too... who knows where that can lead.
 
ooo, go Zoe! and thank you!

a better worded tweet on same article comes further down her page :)

Code: 
https://twitter.com/zoeharcombe/status/1121420673585504257
(sorry i dont know how to embed the twitter post itself)

But interestingly there are no replies to that tweet - without the words chronic fatigue & calling it ME/CFS. I think thats quite interesting in itself in terms of the language that gets traction
 
JemPD said:
ooo, go Zoe! and thank you!

a better worded tweet on same article comes further down her page :)

Code: 
https://twitter.com/zoeharcombe/status/1121420673585504257
(sorry i dont know how to embed the twitter post itself)

But interestingly there are no replies to that tweet - without the words chronic fatigue & calling it ME/CFS. I think thats quite interesting in itself in terms of the language that gets traction
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Good catch. She has a sizeable following so I added a couple of comments with Hilda Bastian's blog and the recent paper detailing the historical mistakes that created the current broken status quo. Hopefully this gets some interest.
 
JemPD said:
(sorry i dont know how to embed the twitter post itself)
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You don't have to do anything special to embed the Twitter post. Just paste in the web address by itself and the magic happens when you post.

JemPD said:
But interestingly there are no replies to that tweet
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@rvallee has just responded, referring ZH to Hilda Bastian. :) :thumbup:

Edit : Cross-posted with rvallee.
 
Arnie Pye said:
You don't have to do anything special to embed the Twitter post. Just paste in the web address by itself and the magic happens when you post.
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Whenever I'm about to post anything with more formatting than plain text I click the "More Options..." button and then click "Preview..." to get a preview of how it will actually look. I've never embedded a twitter link (don't tweet) but I'm guessing this would let you see the magic before you post.
 
BruceInOz said:
Whenever I'm about to post anything with more formatting than plain text I click the "More Options..." button and then click "Preview..." to get a preview of how it will actually look. I've never embedded a twitter link (don't tweet) but I'm guessing this would let you see the magic before you post.
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Yes, Preview works - I just checked.

I don't tweet and don't have any desire to either. I've never created an account. I learned how to read Twitter threads without an account a few months ago and now I regularly read publicly posted stuff by some very interesting people.
 
Sly Saint said:
re the statins issue (also raised by Burne)



uncanny parallels
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effects is reportedly low,” Golomb said. “Being vigilant for adverse effects in their patients is necessary in order for doctors to provide informed treatment decisions and improved patient care.”

Worth quoting for GET approaches in patient info leaflets at Cambs and Peterborough insisted on by the CCG Governing Body I understand from service lead!
 
A pity that Hilda Bastion's blog includes @Action for M.E.'s description of pacing, with its disastrously misleading final sentence:
Action for M.E. said:
Taking a balanced, steady approach to activity counteracts the common tendency to overdo things. It avoids the inevitable ill effects that follow. Pacing gives you awareness of your own limitations which enables you positively to plan the way that you use your energy, maximising what you can do with it. Over time, when your condition stabilises, you can very gradually increase your activities to work towards recovery.
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[My emphasis]

It's good, until the last sentence, which then completely unravels any sense they know what they are talking about. The innocently uninformed will still end up thinking pwME should be able to work their way back to fitness, but will just take a bit longer than they previously thought; they will still end up dangerously misinformed.

ETA: I also realise the previous sentence is pretty suspect too, implying pushing to limits, rather than keeping safely inside them. I would have rephrased this something like:

"Pacing gives you awareness of your own limitations which enables you to carefully plan the way that you use your limited energy, balancing what you can do with it whilst reducing the subsequent payback."
 
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Barry said:
A pity that Hilda Bastion's blog includes @Action for M.E.'s description of pacing, with its disastrously misleading final sentence:

[My emphasis]

It's good, until the last sentence, which then completely unravels any sense they know what they are talking about. The innocently uninformed will still end up thinking pwME should be able to work their way back to fitness, but will just take a bit longer than they previously thought; they will still end up dangerously misinformed.

ETA: I also realise the previous sentence is pretty suspect too, implying pushing to limits, rather than keeping safely inside them. I would have rephrased this something like:

"Pacing gives you awareness of your own limitations which enables you to carefully plan the way that you use your limited energy, balancing what you can do with it whilst reducing the subsequent payback."
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That leaflet written not by patients but an employee of an NHS CFS clinic should have been taken down from the website or prioritised for review. Since last summers announcement of supposed move away from behavioural approaches by AFME. Had they got all their content reviewed by the end of 2018 I think the announcement could have been accepted at face value. As it stands it is becoming thinner and thinner as the weeks go by. Wondering if @phil_in_bristol knows any more about when the AFME web content will be made safe.
 
NelliePledge said:
That leaflet written not by patients but an employee of an NHS CFS clinic should have been taken down from the website or prioritised for review. Since last summers announcement of supposed move away from behavioural approaches by AFME. Had they got all their content reviewed by the end of 2018 I think the announcement could have been accepted at face value. As it stands it is becoming thinner and thinner as the weeks go by. Wondering if @phil_in_bristol knows any more about when the AFME web content will be made safe.
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I agree and will take matters further (Cambs & Peterborough) as it is our Clinical network area
 
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Jerome/statFascinated to find that Beatrice Golumb is also interested in CFS....... Buried in this artiticle/.... https://health.ucsd.edu/news/releas...ss-to-radiofrequency-microwave-radiation.aspx ".....Golomb, whose undergraduate degree was in physics, conducts research investigating the relationship of oxidative stress and mitochondrial function — mechanisms shown to be involved with RF/EMR injury — to health, aging, behavior and illness. Her work is wide-ranging, with published studies on Gulf War illness, statins, antibiotic toxicity, ALS, autism and the health effects of chocolate and trans fats, with a secondary interest in research methods, including placebos...." Beatrice A. Golomb, MD, Ph.D., who heads the federally funded UCSD Statin study, w
 
Jerome/statins/Adverse Effects etc..

Fascinated to find that Beatrice Golumb is also interested in CFS....... Buried in this artiticle/.... https://health.ucsd.edu/news/releases/Pages/2018-08-29-researcher-links-diplomats-mystery-illness-to-radiofrequency-microwave-radiation.aspx

".....Golomb, whose undergraduate degree was in physics, conducts research investigating the relationship of oxidative stress and mitochondrial function — mechanisms shown to be involved with RF/EMR injury — to health, aging, behavior and illness. Her work is wide-ranging, with published studies on Gulf War illness, statins, antibiotic toxicity, ALS, autism and the health effects of chocolate and trans fats, with a secondary interest in research methods, including placebos.
Golomb said an analysis of 100 studies examining whether low-level RF produced oxidative injury found that 93 studies concluded that it did. Oxidative injury or stress arises when there is an imbalance between the production of reactive oxygen species (free radicals) and the body’s detoxifying antioxidant defenses. Oxidative stress has been linked to a range of diseases and conditions, from Alzheimer’s disease, autism and depression to cancer and chronic fatigue syndrome, as well as toxic effects linked to certain drugs and chemicals. More to the point, Golomb said, oxidative injury has been linked to the symptoms and conditions reported in diplomats.
..."
 
Arnie Pye said:
What do you classify as a "benefit"?
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In one case where I knew the individual quite well, it brought LDLs down after a great deal of aerobic exercising failed. In that case there was a strong suspicion of familial hypercholesterolemia, none of his close relatives had lived past 50. My point here is that in that case there was definitely no limitation on exercise prior to the statins. He could build muscle mass and exercise vigorously without problems. If it cost him a little in terms of muscles and exercise tolerance, he had some to spare. Living past the age at which his recent relatives died was a substantial benefit. I'll admit this is probably a rare case, but it illustrates that there are some people for whom the drugs work more or less as advertised. If this were not true, the approval of the drug would be a greater scandal.

The point I wanted to make about reports of adverse responses to treatment after a drug is approved, is that we are running some things that amount to unplanned large-scale experiments. You can certainly argue that this should not happen, but you can't argue that it has not happened. When this situation arises we could gain insight into the biochemistry of people who show unusual sensitivity to a drug, if we did a better job of collecting and analyzing reports of adverse responses. This might give us a crack at a problem which has resisted research attempts, like ME/CFS. Human biochemistry is enormously complicated, and we aren't close to being able to tell a great deal about what is going on in many subpopulations with experiments that will pass ethical review. When an unplanned experiment takes place, part of the analysis should be aimed at gaining something from it besides the idea of "don't do this again." What we have instead is an adversarial situation where nobody is willing to admit they might have unintentionally harmed anyone, or exhibited anything less than perfect foresight. We also try to assign chemicals moral qualities of good or bad, which are only appropriate for things like cyanide or chemical weapons.

I'll give an example where we had to keep some information from a person with mental problems about treatment of yet another person with a variety of physical problems but no mental issues. In order to bring blood pressure down in a hurry, when there was a crisis during surgery, doctors used a drug more commonly associated with treatment of psychosis. The individual I'm thinking about would have called the police had he known, because he demonized that drug. The patient survived surgery because of this, and wasn't even conscious until the crisis was past. There were no mental symptoms as a result. You just don't find drugs with a neatly circumscribed action; all drugs cause multiple effects, some of which you want, and some you don't, in any particular context.
 
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