Video by Dr Myhill: Time to stop the abuse of CFS patients

[Skycloud]

I've never really understood perfectionism as a correlation let alone causation.
No one is perfectionist in every area of their lives, surely. I'm perfectionist in some areas, and a slob in others. Which areas would correlate with increased risk for developing ME?

 

[Skycloud]

?????

Pardon my fog. I'm not sure what you're saying and that's probably on me!

let's just not bother with it, it's not really worth the energy anyway

 

[Esther12]

I am fully aware how unscientific this next statement is, but I just hear so many cases of really active, full of the zest of life people coming down with ME. But assessing objectively if there is correlation there would be extremely difficult I appreciate.

I was a lazy cynic.

Given that all the criteria for CFS have somewhat arbitrary cut-offs, almost any dysfunctional behaviours or 'personality types' could be associated with CFS without this really telling us anything of interest about CFS as a condition or how people should respond to it.

I expect that relatively wealthy, pushy types are more likely to end up seeing a specialist for CFS without that teling us anything about who is likely to come down with CFS.

I think that there can also be some problems with recall bias here too. When people fall ill, suffer a disability, die, etc, there can be a tendency to view their past in an overly 'positive' light.

Given the way in which poorly evidence assumptions about this sort of thing can do a lot of harm, I think it's best to be cautious with any speculations here.

 

[TiredSam]

I am fully aware how unscientific this next statement is, but I just hear so many cases of really active, full of the zest of life people coming down with ME.

That could be because such people get noticed more. There could be thousands of inactive, lacklustre people who have come down with M.E. but you'd never hear of their cases because they can't be bothered to learn how to use social media or join PR or blow their trumpet in any way whatsoever. I thought informed M.E. patients such as the good people of PR were a small minority?

I've never really understood perfectionism as a correlation let alone causation.
No one is perfectionist in every area of their lives, surely. I'm perfectionist in some areas, and a slob in others. Which areas would correlate with increased risk for developing ME?

I can be hard-working and motivated, I can also be a lazy couch potato. For me the question isn't whether any particular personality trait can be correlated to suffering from M.E., but rather whether such a load of unscientific codswallop has any relevance to anything. I find talking about M.E. in terms of personality types an annoying waste of time.

But then I'm a grumpy bugger.

 

[Ambrosia_angel]

But I think there may be a behavioural correlation. From what I read of PwME here, and I know of my wife's character, the people more likely to get ME are very hard working, love life and put heart and soul and lots of zeal into getting on with that life. Often jobs, hobbies, etc they are really passionate about and put ever such a lot into. No one is suggesting these sort of personality traits are bad or wrong - quite the opposite. But the fact such traits are admirable does not preclude a possible correlation (not causation, please do not misread me here!).

The BPS crowd have endlessly bombarded PwME with the slur that their ME is caused by their personality type. So we now seem to jump to the conclusion that if anyone, friend or foe suggests a possible correlation, they must actually be accusing PwME of causation! The BPS crew may have trouble discriminating between correlation and causation, but we need not to.

An interesting question (to me anyway) for people in PR: Are couch potatoes more or less likely to get ME? Or does it make no difference?

When the science is properly understood, a lifestyle correlation may well be seen, but what will also be seen, I'm sure, is that it is not an underlying cause. If it turns out that hiding from life is the best way to avoid ME, that would hardly mean the best thing to do, would be to hide from life.

What other illnesses have a correlation to perfectionism though? Other than generalised anxiety and OCD? Is this something that specific to ME or does it occur in similar conditions.

Even though you say that you don't think its causative there has to be a cause for there to be a correlation. I don't think it's about whether the trait is good or not. If someone said the people with ME are often overly happy then I'd also question that theory too.

I think the PWME previously being "full of life" has to be put into perspective as well. Doing a 9 to 5, holidaying once a year, having a varied social life and taking part in 2 hobbies regularly can seem very fulfilling in hindsight after you've become housebound. Even if doing those things are fairly common for the average 30 - 60 year old woman.

I'm not saying that your theory is wrong but I think sometimes we need to look at ME as any other illness rather than it being a unique entity by itself. Can stress cause ME? Maybe. But stress may also cause cancer, RA, lupus, MS and numerous other illnesses and nobody claims those patients to be perfectionists.

I am fully aware how unscientific this next statement is, but I just hear so many cases of really active, full of the zest of life people coming down with ME. But assessing objectively if there is correlation there would be extremely difficult I appreciate.

 

[mango]

Here are some quotes transcribed from her talk at the Abundant Energy Summit in August 2015:

As you know, a feature of people with chronic fatigue syndrome, or the people who get it, is they tend to be the, you know, the pushers, the perfectionists, the do-or-die, the "I will carry on regardless of all". They ignore their symptoms, they stay up all night with black coffee and chocolate biscuits in order to pass their exams. They burn the candle in both ends, and you know... And so, the very personality that gets you into chronic fatigue syndrome and ME doesn't help you get out of it.

Wrong biscuits maybe? Were you having chocolate hobnobs while your friends had chocolate digestive?

I just want to mention, for the sake of transparency that the audio I recorded was a bit choppy, so it's possible that I might have made a slight mistake when transcribing. It is possible that what she said was "chocolate and biscuits". It definitely sounds like "chocolate biscuits" to me, but I could of course be wrong.

I'm not sure if that helps or hinders your work on the hypotheses, though

(I still have the recording and would be happy to share it again, in case someone would like to listen to the whole thing.)

 

[sianrecovery]

I think the point that Dr. Myhill was trying to make was perhaps that admitting how often people's working conditions led them into ME could prompt a rethink of how firefighters, farmers, airline crew, soldiers, people who work metals such as in the steel industry, and many, many aspects of the so-called beauty industry are treated, and where responsibility lies. I don't think she attributes ME in anyway to perfectionism, but she does comment that many of the people she's treated were in very stressful and driven occupations. What I took from it was that the suppression of the reality of the disease functions in a social, political and economic context.

I completely take on board the very useful comments on how this clip could have been better filmed. I have gone away and discussed this with the other members of the LTBM team. I have also put a correction into the copy accompanying about the cost of PACE.

I'd like to invite anyone here who has been involved in the struggle to overturn PACE findings to think about whether they would also like to do a short film with us on the topic. Its taken three of us a year and half to get the YouTube channel to where it is now, and we haven't seen a penny back from it - or covered our costs. It's a labour of love. It's not ME specific - I asked Sarah to film because I have ME and I want to raise public awareness of it. But it exists, its a platform, and I would be happy to come and make that film. We never use content that our contributors have not approved, and if they don't like the film, we simply delete the file. Contributors also get to approve the copy that goes with the film.

I will be filming more pieces with Dr. Myhill. I have a great deal of respect for her humanity, and crucially, what I believe to be her very find mind. I was educated to MA level at reasonably competitive university - Cambridge - and my husband's background has included training in the sciences and scientific research. We are both naturally of a sceptical turn of mind. Despite some of the comments above, Sarah Myhill is neither a lunatic, a quack, or credulous. She thinks outside the box, and she reads widely. She has decades of clinical experience with ME.

And she remains one of the very few practising doctors in the UK who will stand up and be counted on the reality of ME.

 

[Molly98]

I am getting terribly confused. First St Esther is telling everyone we are socially deprived criminal drug and alcohol addicts, then we are driven perfectionists of a neurotic disposition.

The only thing which seems to have come out of today's posts on Phoenix rising on a variety of threads is that we are driven by biscuits probably of the chocolate variety and therefore we can conclude that the biscuit driven personality has the strongest correlation with ME CFS and therefore it must be a given that chocolate biscuits must be the cause.

End of, problem solved. No more debate necessary.

So we are just looking for a cure now guys

Blimmy maybe this means Sarah Myhill was right all along.

 

[trishrhymes]

I completely take on board the very useful comments on how this clip could have been better filmed. I have gone away and discussed this with the other members of the LTBM team. I have also put a correction into the copy accompanying about the cost of PACE.

I appreciate the effort that went into the filming with Dr Myhill. I don't know much about her work and watched it with an open mind, and hoped to get an impression of her from this from the video.

Sadly I was completely put off by the fact that she seemed ill prepared and hesitant at the start and made several errors of fact about PACE, not just the cost. I was left wondering whether all her work is as ill-researched. I don't actually believe that is true, and I have gathered she is very well respected by many patients, but all the video left me with was an impression of a passionate and rather scatty person who hadn't bothered to prepare or rehearse what she was going to say.

It did not give me confidence in her either as a doctor or as an advocate speaking out for ME sufferers.

I assumed, possibly incorrectly, that this was done as part of the MAIMES campaign. It has seemed strange to me that a well intentioned campaign on behalf of ME sufferers to raise the issue of the harms done to ME patients with MP's should focus so much on one doctor and not involve any of the ME charities.

Again, I may have misunderstood the intention, but I have been left with the uncomfortable impression of a campaign promoting the work of Dr Myhill, and I saw this video in that context.

I have been reluctant to say much, as I am sure the intentions of all involved are good, and I appreciate the effort, but I worry that the effect will not be that desired by the makers of the video.

Now you tell us this is part of the LTBM team work. This has left me even more confused. Can you explain what this is. I don't know what the initials stand for.

I honestly do wish you well, and don't like being so critical, but, like other ME sufferers, I worry about the effect of such an amateurish video. I can't help comparing it with the quality of all the videoed presentations at the recent OMF conference where the speakers were extremely well prepared and used professional quality visuals.

 

[AndyPR]

Going back to the "personality type most likely to get ME" argument, couldn't a strong argument be made that those people who come to the attention of doctors like Myhill are likely to be those who are of a type to continue to seek answers and not just accept the status quo. So there is self selection going on, where those people who are perhaps more likely to view themselves as perfectionists are exactly the same type of people who are going to look for answers beyond what they are told by their GP.

And another thought I have on that subject is, what about those people who develop ME when they are kids - how does the "perfectionists are more likely to develop ME" theory apply to them? Those who are more determined to be perfect kids are more likely to develop ME?

My personal opinion is that it's too simplistic a theory to actually make sense to me.

 

[TiredSam]

I just want to mention, for the sake of transparency that the audio I recorded was a bit choppy, so it's possible that I might have made a slight mistake when transcribing. It is possible that what she said was "chocolate and biscuits". It definitely sounds like "chocolate biscuits" to me, but I could of course be wrong

I think this is very important, because if M.E. is caused by chocolate and biscuits, then biscuit M.E. is only one subset of the disease, with chocolate M.E. being another subset. It could be that both subsets require a very different approach to management and treatment.

Anyone who has suffered the double assault of a chocolate biscuit does of course have a much higher risk of developing M.E., but then chocolate biscuit eaters are notorious risk-takers anyway, and it's hard to know how to stop them finishing off a packet if they're really determined.

In my case I think it was a packet of party rings that led to my downfall. So easy to be wise after the event.

 

[slysaint]

St Esther

"perfectionists are more likely to develop ME"

the PACE authors are pretty safe then.

 

[Skycloud]

I think the point that Dr. Myhill was trying to make was perhaps that admitting how often people's working conditions led them into ME could prompt a rethink of how firefighters, farmers, airline crew, soldiers, people who work metals such as in the steel industry, and many, many aspects of the so-called beauty industry are treated, and where responsibility lies. I don't think she attributes ME in anyway to perfectionism, but she does comment that many of the people she's treated were in very stressful and driven occupations. What I took from it was that the suppression of the reality of the disease functions in a social, political and economic context.

I completely take on board the very useful comments on how this clip could have been better filmed. I have gone away and discussed this with the other members of the LTBM team. I have also put a correction into the copy accompanying about the cost of PACE.

I'd like to invite anyone here who has been involved in the struggle to overturn PACE findings to think about whether they would also like to do a short film with us on the topic. Its taken three of us a year and half to get the YouTube channel to where it is now, and we haven't seen a penny back from it - or covered our costs. It's a labour of love. It's not ME specific - I asked Sarah to film because I have ME and I want to raise public awareness of it. But it exists, its a platform, and I would be happy to come and make that film. We never use content that our contributors have not approved, and if they don't like the film, we simply delete the file. Contributors also get to approve the copy that goes with the film.

I will be filming more pieces with Dr. Myhill. I have a great deal of respect for her humanity, and crucially, what I believe to be her very find mind. I was educated to MA level at reasonably competitive university - Cambridge - and my husband's background has included training in the sciences and scientific research. We are both naturally of a sceptical turn of mind. Despite some of the comments above, Sarah Myhill is neither a lunatic, a quack, or credulous. She thinks outside the box, and she reads widely. She has decades of clinical experience with ME.

And she remains one of the very few practising doctors in the UK who will stand up and be counted on the reality of ME.

Hi @sianrecovery I would agree that there is a tendency to deny the reality of ill health, if I've understood you correctly. Not 'being allowed to be sick', and that pressure can be internal and external. From a personal standpoint it was a contributory factor to the course of my illness, once I became ill, so I can understand it's an issue worth raising in that context. It's also true that it's an issue socially economically and politically and PACE demonstrates that very clearly.

Like @trishrhymes I'm interested to know more about your group.

 

[Skycloud]

This thread has gone off topic. Perhaps someone would like to start a thread about big data chocolate biscuit trials and post there . It's become confusing and hard to follow

 

[anni66]

Going back to the "personality type most likely to get ME" argument, couldn't a strong argument be made that those people who come to the attention of doctors like Myhill are likely to be those who are of a type to continue to seek answers and not just accept the status quo. So there is self selection going on, where those people who are perhaps more likely to view themselves as perfectionists are exactly the same type of people who are going to look for answers beyond what they are told by their GP.

And another thought I have on that subject is, what about those people who develop ME when they are kids - how does the "perfectionists are more likely to develop ME" theory apply to them? Those who are more determined to be perfect kids are more likely to develop ME?

My personal opinion is that it's too simplistic a theory to actually make sense to me.

ME is like a huge jigsaw with missing pieces. All pieces are interlinked and you can' t comprehend the full picture whilst bits are missing, but all pieces contribute to the whole.

I do think that there is something in the over achievers, but more from a stress angle.

Over achievers put pressure on themselves, and throw in other stressors and a prolonged fight or flight response this presses epigenetic buttons.

Immune system suffers making it easier for viral / pathogenic infections , or simply a slow low immune burn to inflammation and illness. I think this is common to many chronic illnesses, not just ME.

It may be the trigger type or the changes in gene expression which determine which illness is manifest. It is having a number of jigsaw bits that seems to be key, not just one or two.

From being a member on parents forums, there are common traits which seem significant- very many are high achievers ( be it academic and / or sports), have joint mobility/ growth spurt issues, and infection/ viral onset is common suggesting a low immune system. There is also vaccination to consider - between 10-14 there are multiple vaccinations which may not be a good idea if there are underlying inflammatory processes.

Whilst this is not the only " history", it seems to be the case for very many kids. I can' t find any studies which combine these variables. It is this combination that makes things idiosyncratic.

 

[barbc56]

I' would think there are a lot of perfectionist who never come down with me/cfs. If this is a subgroup I would speculate it consists of very few patients.. Maybe there's a trigger if this subgroup does develop me/cfs. I would speculate that relatively speaking, the trigger would be more important than being a perfectionist. I have no idea if that trigger would also apply to other subgroups.or not.

Are there other health conditions that develop among perfectionist and if so why one over the other? Maybe genetic predispositions combined with other factors?

 

[mango]

The BPS lobby in particular has been studying and publishing papers on personality and personality disorders in people with CFS for several decades now... And there is still no evidence. I can't believe we're actually still having this discussion...

Here's an article by Jörgen Jelstad, well worth a read:

Finnes det en ME-personlighet?
https://debortgjemte.com/2014/10/26/finnes-det-en-me-personlighet/

Google translate, English (Is there a ME personality?)
https://translate.google.se/transla.../26/finnes-det-en-me-personlighet/&edit-text=

 

[Snowdrop]

Quote from the article which is to the point if you want to be thorough about determining how things are:

"The researchers therefore write that you need to investigate people before they get sick and follow them through the process, so-called prospective studies, to say something sensible about certain personality traits is a risk to the disease."

 

[TigerLilea]

Myhill is looking like a well-intentioned quack at this point. Which is certainly better than the other sort of quack, but still not one I have any use for. Much like the other quacks, she does not seem to distinguish between ME and burnout.

I've always felt that Myhill was a quack. I read a quote of her's years ago and it was obvious then that she didn't know the difference between "chronic fatigue" and "Chronic Fatigue Syndrome" .

 

[Sushi]

This thread has gone off topic. Perhaps someone would like to start a thread about big data chocolate biscuit trials and post there . It's become confusing and hard to follow

We've had some "chocolate biscuit" Reported Posts today. They have stealthily invaded two threads--did the eclipse cause this? Maybe! But it does make it difficult to follow the theme of the thread so again most of the "biscuit posts" have been deleted.