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

[Wonko]

It's got nothing to do with Dr Myhill saying things I, or anyone else, approves of. She is as entitled to her pet theories and opinions as anyone else and she can say whatever she likes, as a private individual, within the bounds of the current political climate of course. As a representative of pwMe, or as a representative of the medics in favour of real treatment for pwME things are unfortunately a little different.

I was merely saying that particular video, contained some unhelpful statements as far as raising the public's awareness of M.E. in an accurate way, is concerned - that's all. If a video is going to be released, for the benefit of pwME, then it should be at least as accurate factually, as possible. Not being accurate on significant details will lead to it being dismissed by the media and the public, at best, or it could be used by our opponents to impact negatively on us in the media. Because of that I don't think it's an unreasonable expectation or request, or that it maligns you or Dr Myhill to ask for/comment on.

I'm sorry if my comments offend you, or Dr Myhill, that wasn't the idea.

 

[Deepwater]

But it's not illegal to prescribe 'off license'.

Don't tell me. It was the edict of the snoop who was sent to scrutinize her work. I know she was going to take it up with the GMC, but my own GP was, even before that, too scared to prescribe Valacyclovir for me for the same reason.

 

[IThinkImTurningJapanese]

Recently a cfs activist said they found Jen Brea’s Ted talk ‘too whingy’ (it’s been watched 1.3 million times). It’s been suggested that Unrest (4 film awards so far) is maybe too emotional, not adequately educational. Some didn’t support the MEA petition because they couldn’t endorse all its demands (though 15,000+ people signed). Some wouldn’t share the Daily Mail article because it was in the Daily Mail (4 million readership, I’m told). And in this thread one of the only doctors prepared to treat cfs in the UK, who has been hounded by the GMC but never successfully, who probably has more direct experience of treating patients with cfs than any other doctor in the UK, has been demolished by those she’s fighting for.

The perfect is the enemy of the good.

 

[anni66]

Don't tell me. It was the edict of the snoop who was sent to scrutinize her work. I know she was going to take it up with the GMC, but my own GP was, even before that, too scared to prescribe Valacyclovir for me for the same reason.

And we wonder why GPs etc don' t take on different treatment options....

 

[Skycloud]

@sianrecovery I appreciate the work that went into the video (though as I have said before I have some reservations). I hope it succeeds in furthering ME advocacy. I'm glad you've read the thread and posted, perhaps some of the constructive criticism will be helpful to you and Dr Myhill in the making of the playlist you mention.

Do you feel at liberty to share broadly what you have in mind?

 

[Ambrosia_angel]

I have the greatest admiration, and indeed gratitude, for Sarah Myhill and all she has gone through over the years in order to go on offering tests and treatments to people with ME which are otherwise unavailable to patients. You have to understand how bad the situation is in the UK to understand how important she has been for many patients, with all her flaws. I don't like the fact that she calls ME CFS, but I can live with it.
Her emphasis on environmental causes of ME is not surprising - environmental medicine is her specialism, and she lives and works in a remote rural area full of sheep farms so will I've no doubt have seen many cases of organo-phosphate poisoning. She also prefers to use a nutritional approach to treatment where possible. It did take her quite a long time to come round to the idea of persistent viral infection that diet and supplements alone couldn't fix, but she did, and last year started prescribing Valacyclovir until stopped from doing so by the good old GMC.
But I do agree that she is not the right person to be spearheading this campaign as she doesn't keep a clear head and keeps getting the details wrong, particularly regarding the political history of the story (wrong figure for PACE costs, Queen Elizabeth College instead of Queen Mary, and saying it is Wessely's institution, etc). That is like handing the PACE crowd a get-out-of-jail card for them to hand on again to journalists and politicians. I thought she sounded very nervous - perhaps not surprising when you think of the people she is publicly calling frauds and criminals.

Well I do understand how bad the UK situation is. I've experienced it. My family actually considered going to her in the early stages but was told that I should go down the PACE route.

I understand that she's not trying to self appoint herself as the leader of this movement but then again the video Is supposed to be educational. That's my only worry. This video is meant to educate people who aren't aware of the issues surrounding the treatment of ME and when she's stumbling over her words, talking a bit too fast and making factual errors it's disappointed. Even if it is with good intention.

My only worry is about others who will watch it.

 

[barbc56]

I agree with @Ambrosia_angel Think about the audience that's hearing our message.

IMO, we.need someone who firmly believes in science. Otherwise, there will be wasted time focusing on Sarah Myhill's beliefs and practices. If we want to discredit PACE and it's unscientific methodology then we need to counter with science. They think they're practicing science and our goal is to show they aren't.

Look what's happening to this thread. We keep getting side tracked by the issues of her credibility. That's certainly not a negative and debate is fine on this thread. However it points out that if we on this forum who ultimately have the same goals are going back and forth, how will this play out in the real world?

If you like her, that's fine. If you practice what she believes, that's fine. If you're her patient that's fine. It's a matter of personal choice.

What's not fine is when the focus of our goals is superseded by the issue of whether people "like" or "dislike "Sarah Myhill. I think her intentions arr genuine but that doesn't mean she will be a good spokesperson, on this issue.

We have to be very very careful who we want to represent us and that's across the board. It's simply a good Public Relations move.

 

[Barry53]

Sorry, Barry, of course you have a perfect right to pose questions and speculate.

I think I reacted rather strongly to your ideas because I've been reading a lot of this sort of speculation stated as fact by the worst psychs in stuff Keith Geraghty has been revealing on Twitter related to his research. I think I have psychological speculation indigestion!

Forgive me if I appeared to be trying to shut down the sharing of ideas.

Thank you Trish. The limitations of the written word - re-reading my post I realise many people do in fact phrase statements akin to the way I phrased my question . Trouble is I sometimes seem to go into "forum shorthand" mode, missing out some of the clues to what I'm actually thinking! And yes, such an awful lot of indigestible rubbish to deal with. I think I should maybe get into Twitter, because I'm missing out on some interesting stuff by the look of it.

 

[Skycloud]

We have to be very very careful who we want to represent us and that's across the board. It's simply a good
Public relations move.

In practice we can't really regulate the people who are seen to represent us, we're just a disparate bunch of pwme with access to the internet.

 

[Barry53]

As you said, there must be other factors that play a role - it seems to me that those other factors (whatever they are) must have a greater significance in the development of ME than a particular pattern of behaviour given that:

And if in due course any particular behaviours do show strong correlations, those behaviours are not going to be causal, but plain and simple correlations. I was reading an example just the other day where some had argued that people of a miserable mental disposition were prone to cholera, whereas in fact it was simply the poor living conditions which fostered cholera, also caused people to feel downhearted and miserable. Correlation not causation. So strong behavioural/emotional correlations do not, as the BSP crowd seem so fanatically obsessed with, pinpoint a reason ... just something that will fall into place once the true answers are found.

 

[barbc56]

Remember when Ulcers were thought to be caused by stress as well as type one personality.

Well they aren't!

 

[barbc56]

In practice we can't really regulate the people who are seen to represent us, we're just a disparate bunch of pwme with access to the internet.

?????

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

 

[barbc56]

I have deleted my response to Barb, which was based on frustration, and unhelpful. I'm sorry you don't find the clip of use. But I don't regret making it, and I believe MAIMES has the chance to really raise the level of public consciousness of the farce of ME treatment in the UK. I understand Dr Myhill may not communicate in a way you approve of, but I believe she has important things to say, and the courage to say them. I am of course, somewhat protective of her as when I met her, I was housebound and intermittently bedbound. I am not cured, but I do now function, largely as a result of her treatment.

Were you referring to me or @Valentijn? It's her quote. Maybe both of us?

Edit I meant to combine the three posts into one post. If I weren't so tired I would do that now. By tomorrow it might not make a difference.

 

[Barry53]

And avoided making statements attributing ME/CFS to personality and behavioral traits.

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.

 

[arewenearlythereyet]

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.

I hear what you are saying, and as a perfectionist hard working person I may be typical?

However, to decide whether this means anything at all, you have to look at percentages by personality type to see if "hard working" "perfectionist" have higher incidence in pwme vs people who don't .

And this is where the whole thing unravels ...what is the measure of "perfectionism" or " hard working". The only people that think they can measure such things are......people who make it up and put extremely subjective measures on these qualities.

I thought I worked hard when I was doing unsociable hours sometimes 15 hrs in one stretch and averaging 8-9 hrs per day and had to make decisions at a pace that was uncomfortable. Suddenly when I was asked to cover 2 other people's jobs and I was then working 15-18 hrs a day for 6 months and weekend work my prior life seemed less hard work.

My point is, perspective always varies with measures such as these...most people will say if asked that they are hard working and less people will want to admit that they are perfectionists. That is human nature. You also can't have a selection of elite people judging what people's personality traits are either because they will also be prone to making subjective assessments (e.g. by the design of questionnaires etc). I feel uncomfortable with any study that would look at anything that wasn't measured objectively given the implications.

 

[trishrhymes]

Also we have to remember that their assessment of whether someone is hardworking or a perfectionist is based entirely on the answers the patients give in questionnaires.

People with ME will often suffer from years of being judged as lazy or malingering by friends, family, employers, doctors etc. In order to counter this we are, I think likely to answer questionnaires in ways that try to demonstrate that our fatigue is not laziness or deconditioning. We will therefore emphasise how busy and active we were before becoming ill.

This then is interpreted as perfectionism. We can't win.

 

[arewenearlythereyet]

Also according to this wonderful example, you can see how much confusion exists in defining perfectionism among the psychiatrists:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3175345/

if you don't want to read (and I don't blame you its rubbish)...the summary from the end is:

"In summary, tremendous progress has been made by researchers in identifying several different personality traits that contribute to perfectionistic behavior. The current study provides a new measure, the M-CUP, which represents each personality trait identified in previous research in a single measure. We hope that use of the individual scales on this measure will facilitate further understanding of the underpinnings of perfectionistic behavior."

My summary (I only skimmed it but that was enough to be honest):

So a load of psychiatrists over the years have used different scales that have got more and more confused and complicated as they have added new and more made up traits. This 2012 study tried to unpick it but couldn't....mainly because they were trying to correlate a load of psychiatrists opinions on what the character traits were that defined the concept of perfectionism. More work needed...forever probably so they can keep bring the cash home. And it still all boils down to the opinion of one person over another. I also can't stand made up words like "perfectionistic" being used....they cant even use real words for goodness sake.

I wonder how many traits they would apportion to cynicism? I presume they would decide up front that these were negative qualities?

 

[Barry53]

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.

 

[arewenearlythereyet]

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.

and then what would you do with it anyway.... tell everyone healthy not to work hard in case they get ME?

I'm thinking the DWP wouldn't like that message

Seriously I do wonder what all these personality assessments really achieve. I've done a few.... normally on those awfully contrived team building days.

My personality changes each time. Sometimes I'm gregarious and a team player ,other times I'm a loner perfectionist....other days they say I'm a complete pompous ass ...so that cant be right can it?

depends how you find me on the day I guess?

 

[Barry53]

The perfect is the enemy of the good.

I wrote this on a board at work many years ago:-

Without idealism there is nowhere worth going to.
Without realism there is no way of getting there.
You need both, working together, to get anywhere worthwhile.
Pragmatism.