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

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Clinical studies have continued to suggest a relationship between silicone breast implants and chronic fatigue syndrome.
[...]
Our patient illness (Sic CFS) started following hepatitis-B vaccine, suggesting that it was caused or accelerated by vaccination. In parallel to vaccination our patient suffered from breast injury, which might represent the time of silicone leak. The exposure to the adjuvant, silicone, might have augmented her immune response to the vaccine.

etc.
I came down with ME/CFS within a few days of a sick child coughing on me, which was also eight months after receiving breast implants with a definite rupture later on, was also receiving a series of Hep B vaccinations for my work as a medical technologist that brought me into daily contact with sick people and their blood.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
She says she's seen 250 women who have had breast implants who got CFS. Maybe she is right about that. I'm not aware of any studies on it, but if she has seen that many patients who fit that bill then I don't see anything wrong with her saying so. I think you will convince more people though if you frame this and other exposures etc. in terms of you've seen it, you can see there are links there but there needs to be proper research to confirm it. Your own certainty is not enough basically, it's not how science works.

I think attacking conventional medicine for failing to come up with appropriate treatments is fair. Though I think it is unwise to frame it in those terms because the minute you say "conventional medicine" in a negative sentence it makes it sound like you do not believe in the principle of conventional medicine, and that you believe in alternative medicine. Well, from my experience alternative medicine is BS. The principle of conventional medicine is right, the problem is with the abuse of conventional medicine, evidence-less medicine being passed off as evidence-based medicine, and the politics and influential groups that promote these things as good. That is what should be attacked, not "conventional medicine".

It's important to get details like the name of the hospital, the cost of the study, etc. right. I think if you are going to invest time and effort in going on the attack about something like PACE you need to make sure there are no holes in your armour, because projectiles are going to be fired at you, of that you can be sure. You basically nullify any good points you made because they will simply focus on your weakest points.

A more general point is that watching the video she comes across as a bit emotional. I don't mean that to sound bad like it perhaps does, I know she cares and is passionate about this and I think that is to her credit, but all I mean is that this sort of thing is more effective if you come across calmly and individually removed from the topic. I imagine that having seen so many sick people with ME and in addition she has been attacked herself for her work, that makes it hard not to come across passionately about the topic, but it would be more effective if she came across as not emotionally invested, or at least able to apply professional distance to the situation (even if that appearance of professional distance is not all that real.

You have to think about your audience and what you are trying to achieve. I imagine others involved in this movement are like minded, and she sees lots of patients and talks to them about the same topics and you can speak like this with them, they are agreeable, on your side, but you have to look into that camera and see the most critical, unforgiving, skeptical audience and even enemies who are going to pick it apart and attack it. She mentioned MPs so this sort of campaign needs to be a bit more appropriate for that, so you need to adjust the way you talk about the topic to engage effectively with your true audience.

I think it is very good to talk about the targeting of doctors who want to work in ME. That is something we need to hear more about, it needs to come out in the open and for questions to be asked about who is targeting these people and why. But carefully; I imagine some doctors do promote quackery and maybe that is why they were struck off. But if Dr Myhill has faced 30 complaints, 7 hearings and the GMC and found nothing wrong, then that suggests she is being persecuted for nothing other than the fact she does not agree with the BPS approach and that can't be right. Are those complaints from the BPS supporters then?
If she decides to talk more about that I hope she will review her approach to ensure she gets the most out of it.

I do think it is brave to do this because it's clear that speaking out makes you a target. I appreciate Dr Myhill doing it. I believe strongly that this sort of thing needs to come out in the open, keeping quiet just maintains the power with those who want it to remain as it is, it's actually better, and even safer, to put this out in the open - so long as you do it carefully. I just hope any future videos will be a bit more careful. Maybe Dr Myhill and those who like this video a lot will not like what I have to say, and will feel upset with me, but I am actually just trying to give important constructive criticism because I think a campaign like this can have a positive impact if done correctly. I do think such feedback needs taking on board though or such a campaign is likely to fail.
 

Deepwater

Senior Member
Messages
208
:star:
She said "funded to the tune of" ... I wonder if there were other indirect costs that she may be considering?

Edit: Or she may have done a horridly quick addition of 5,000,000 plus 250,000 and misread it for 2,500,000 instead?!

Maybe she confused the amount in sterling with the dollar conversion, because I seem to remember that a lot of American commentators were quoting the cost as about $8 million.
Brilliant Dr. Myhill.:):star::cocktail::cake::gift:
 
Messages
2,391
Location
UK
Maybe Dr Myhill and those who like this video a lot will not like what I have to say, and will feel upset with me, but I am actually just trying to give important constructive criticism because I think a campaign like this can have a positive impact if done correctly. I do think such feedback needs taking on board though or such a campaign is likely to fail.
Actually I fully endorse what you say, and appreciate you saying it.

My problem is that Sarah Myhill is one of those people who has some major plus points together with some major minus points - always a tricky character combination. (Can apply to many people in our personal lives!). My easiest option would be to sit on the fence, but when it comes down to it I just have to admire and support someone who is so willing to say to the world what so many other people know needs saying, and want to say it, but don't. Her approach is to effectively say - "F*ck the lot of you, this is what I think needs saying, and tough sh*t if you don't like it." I know she probably leaves enough holes to drive a coach and horses through, but for me at least, the good outweighs the bad, though it's a tricky balance. There is an innocently uninformed audience who needs educating, and she just might be the right character to appeal to them.

But she is like many things in life, can't have the good without the bad, and each individual has to decide which way to go with her.
 
Messages
1,478
I still don't see how her drive and passion counteracts

  • Her poor recall and use of facts particularly those key to winning the argument
  • Her conflicting and confused advice on treatment
  • Her dubious pseudoscience theories that don't have any scientific rigour to them
  • Her lifestyle opinions on the "Stone Age diet" (almost religious)
  • Her alternative medicine stance and anti conventional medicine rhetoric
  • Her poor presentation skills
  • Her checkered history with the GMC (from a journalist perspective)
  • Her conflicts of interest selling products to patients from her website
  • Her lack of understanding of running a campaign

No, there is no sitting on the fence for me ......I forced myself to watch the whole video and found it cringeworthy to say the least. It's not just a one off either, I recall the campaign kick off materials were just as amateurish emotional and scatty.

I think we have better chances taking a more professional and fact based stance as a contrast to the unprofessional antics of the BPS crew. They are masters of spin and we need to be whiter than white when taking them on, not emotional and hairbrained.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
emotional and hairbrained
Nothing wrong with being emotional, I'm sure we all are about this ****** illness, but emotion needs to be channelled effectively when advocating. M.E. sufferers have gathered chanting with signs and even stood naked on the streets of London, which as part of a considered, structured and coordinated campaign is a fine thing (#MillionsMissing).

Myhill seems to be going off on her own with a cry of "follow me!". Well excuse me while I stop and think. In the past there have been occasions where she seems to have enjoyed a status uncomfortably reminiscent of a cult leader amongst her followers. But M.E. sufferers will never unite behind her they way they do for people like Ron Davis or David Tuller. She's just too controversial for the role she's assigning herself here. A section of the M.E. community are big fans of hers, another section think she's a bit of a quack, and I suppose there must be a load of people in the middle too. This is at least the third thread in my time on PR where there has been a range of views expressed about Sarah Myhill (which is why I can't be bothered looking up anything about her any more, been there, done that).
 
Messages
1,478
Nothing wrong with being emotional, I'm sure we all are about this ****** illness, but emotion needs to be channelled effectively when advocating. M.E. sufferers have gathered chanting with signs and even stood naked on the streets of London, which as part of a considered, structured and coordinated campaign is a fine thing (#MillionsMissing).

Myhill seems to be going off on her own with a cry of "follow me!". Well excuse me while I stop and think. In the past there have been occasions where she seems to have enjoyed a status uncomfortably reminiscent of a cult leader amongst her followers. But M.E. sufferers will never unite behind her they way they do for people like Ron Davis or David Tuller. She's just too controversial for the role she's assigning herself here. A section of the M.E. community are big fans of hers, another section think she's a bit of a quack, and I suppose there must be a load of people in the middle too. This is at least the third thread in my time on PR where there has been a range of views expressed about Sarah Myhill (which is why I can't be bothered looking up anything about her any more, been there, done that).
I should have said "appearing" emotional.

Group outrage is one thing and can be powerful. A "leader" speaking out on their own, representing others being out of control of his/her emotions and saying silly things is a whole other thing.
 

barbc56

Senior Member
Messages
3,657
My point about the breast implants was not that they never cause me/cfs but Dr. Myhill's focus on issues such as these to the exclusion of other causes such as physiological abnormalities, findings by eminent scientist such as Dr. Davis, shows that she hasn't kept up with the latest findings about me/cfs

How patients feel about her is beside the point. The fact that she advocates non scientific treatments is. She will make us a laughing stock by those in power. She's had to change many of her recommendations on her website that were just plain wrong. She's been brought up by the GMC which may or may not have been justified, several times. Those we are trying to convince have not forgotten these issues and could use them against us as well as sidetracking our goals by having to defend her instead of using that time to focus on them.

There are others who are held in high esteem such as @Jonathan Edwards., the journalists who are promoting our stance, James Coyne, etc. who would be more successful . Sorry some of the other names allude me at the moment.

This shows her incredible lack of insight into me/cfs, and it would be a Public Relations disaster.

However you feel about her, whether you are a patient, the reality is we need spokespeople whose message will not be sidetracked by her issues Credibility is essential if we want to get anywhere. That's simply the reality of this situation.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Actually I fully endorse what you say, and appreciate you saying it.

My problem is that Sarah Myhill is one of those people who has some major plus points together with some major minus points - always a tricky character combination. (Can apply to many people in our personal lives!). My easiest option would be to sit on the fence, but when it comes down to it I just have to admire and support someone who is so willing to say to the world what so many other people know needs saying, and want to say it, but don't. Her approach is to effectively say - "F*ck the lot of you, this is what I think needs saying, and tough sh*t if you don't like it." I know she probably leaves enough holes to drive a coach and horses through, but for me at least, the good outweighs the bad, though it's a tricky balance. There is an innocently uninformed audience who needs educating, and she just might be the right character to appeal to them.

But she is like many things in life, can't have the good without the bad, and each individual has to decide which way to go with her.

All good, I agree. It's never realistic to expect a person to do things faultlessly and there are lots of advocates in the ME sphere who have flawed approaches but still have a positive overall effect - though they would have more support and more effect if they adapted their approach. You're right that people need to decide on balance whether individuals and campaigns are worth getting behind or not. I too admire Dr Myhill for standing up against these injustices. I think in this case, personally, I want to support it but presently can't, that's where the balance is for me, but it's close to the line of acceptability and if improvements occur going forward then the needle would swing the other way and I'd be able to support it on balance.
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
Maybe she isn't the correct person to be leading such a campaign. We need to have someone who is well known in English politics alongside someone who is a current medical researcher for ME. If we could get a popular MP who is well known in the Tory, Labour or even Lib Dem party then we wouldn't necessarily need MAIMES. We don't need several MPs, we need 1 who has the authority to start things of.
A public inquiry isn't necessary and I doubt it'll do much other than encourage those involved to apologise. I'd prefer recognition on the issue and public outrage. In this society its a lot more powerful due to online media outlets and social media. I've seen how the media outrage can cause gov and organisation to act a lot quicker on things. I don't think going through the establishment will help at this point. Although it is very different look at how quickly they acted on the grenfell cladding situation due to public outrage.

I like her tenacity but she was stumbling over her words a little especially at the beginning. Tbh I wouldn't really want this video to go mainstream. All she needed was to talk slowly, calmly and get her facts straight.

On another note I don't think she was incorrect about the occupational hazard comment. Most modern day chronic illnesses have a clear correlation to a lot of environmental factors. The only issue is that ME happens to be more complex than most illnesses in terms of diagnosing and treating. I have no doubt that breast implants can increase the likelihood of getting ME and there's probably a connection to numerous other conditions as well.
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
That was my impression. A bit of a loon. And bashing 'conventional medicine' is immediately going to make a mockery of any claim to be giving the real scientific facts. This is not going to help us get a Channel 4 documentary set up. It is not going to make NICE, Cochrane and the medical and psychology professions think twice. It will confirm just where people thought the problem was - loons - I am afraid. But it may keep the stew boiling.
Are there currently talks of a channel 4 documentary? That'd be amazing. I think even a 4 min buzzfeed video would help especially seeing as the treatment of PWME has a lot to do with gender inequality.
 

mango

Senior Member
Messages
905
I believe it's very important to also listen to and consider what Myhill is saying about us, when she's not talking to us, in order to get a more complete picture of what she's like as an "advocate" for us and our disease.

Here are some quotes transcribed from her talk at the Abundant Energy Summit in August 2015:
Sarah Myhill said:
The first and most important thing to grasp about chronic fatigue syndrome is: it is not a diagnosis, it's a clinical picture.
Sarah Myhill said:
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.

Presenter: Hahaha, so true! So true!
Sarah Myhill said:
So, what I'm saying, you know, is a modest amount of carbohydrates is fine, if you've got perfect digestion. But of course many of my ME patients have got less than perfect digestion, and because they are fatigued they haven't got the energy to cook or prepare food, so they tend to go to things which are cheap, convenient and addictive, because that's the only pleasure they get in their day! So, we go over those foods when we're stressed, as I say those carbohydrates are addictive and we call them comfort eating. [...]

So, you know, it just illustrates that, you know, how we use carbohydrates for psychological reasons, but they mess with our digestion, they mess with our metabolism, and they are a major risk factor for chronic fatigue syndrome.
Sarah Myhill said:
I consider being vegetarian a major risk factor for chronic fatigue syndrome.
Sarah Myhill said:
What I try to emphasise, or make available in my book, or the two books -- there's another one coming out shortly -- is you can do a lot of this yourself. And you can do a lot of this stuff with simple nutritional therapy. You don't need to go and see a clever doctor and have hundreds of tests. All this stuff can be done at home. It's difficult, it's not easy, it's a hard path to walk, but it's all very doable. [...]

As I get older, and perhaps wiser, you know, I spend more time talking about the very basics. And what I find is, the very basics done really well, for many people is all they need to do.

All we have to do is get your 51% right, and the body will do the rest. If you're only 49% right, you're still on the slippery slope downhill. And sometimes, you know, hard work on the diet, getting that right, being disciplined about sleep, being disciplined about supplements and pacing, and that's all you have to do to get well. And, you know, some people will need the mitochondrial package as well, but you know, you can do that just by taking supplements.

Her comment on why her method doesn't seem to work for everyone:
Presenter: And people don't often stay with the program long enough, and they give up too soon, or if they do it in a piecemeal way [...]

Sarah Myhill: Excellent analogy. I can entirely concur with that.

Sarah Myhill said:
Some patients, the only way they can be well is to take regular prescription hypnotics to guarantee themselves a good night's sleep on a regular basis, and then they can start to get well. And that's where psychotherapy is, can be incredibly helpful because it gives you the psychological techniques to deal with, you know, past horrors whether that's child abuse or bullying or whatever, or you just, some people are just constitutionally highly strung and it goes back through the family to mother and grandparents, you know, in front of them.

:eek::(:grumpy::depressed:
 
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TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
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.

Presenter: Hahaha, so true! So true!

Hahaha, such bollocks! Such bollocks!

they tend to go to things which are cheap, convenient and addictive, because that's the only pleasure they get in their day!

So if cheap, convenient and addictive things are the only pleasure M.E. sufferers get in their day, does that mean that as I hardly ever eat anything cheap, convenient and addictive, then my day must be completely devoid of pleasure? Because actually I eat extremely healthily, feel much better for it, and normally manage to find pleasure in one or two parts of the day when I'm not eating. I must be an exception.

I'm sure many of us would love to be able to "stay up all night with black coffee and chocolate biscuits" - but do any of us?

I consider being vegetarian a major risk factor for chronic fatigue syndrome.

Well I'm sure she's been very thorough doing the numbers on that anecdotal correlation.

Presenter: And people don't often stay with the program long enough, and they give up too soon, or if they do it in a piecemeal way [...]

Sarah Myhill: Excellent analogy. I can entirely concur with that.
I thought we were perfectionists? Ok, perfectionists who approach things piecemeal, give up too soon, and have a sloppy attitude towards eating properly. Vegetarians, but obviously not for health reasons because we stay up all night eating biscuits.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
* major eye roll*
And to think I bought her book :bang-head::cry:
I don't think there is much wrong in the quote, apart from the last paragraph. It certainly fits me!
She talks initially about 'the people who get it' who 'stay up all night with black coffee and chocolate biscuits in order to pass their exams. They burn the candle in both ends'.

That certainly describes me, although I guess it doesn't describe everyone with ME.
 

Stewart

Senior Member
Messages
291
I don't think there is much wrong in the quote, apart from the last paragraph. It certainly fits me!
She talks initially about 'the people who get it' who 'stay up all night with black coffee and chocolate biscuits in order to pass their exams. They burn the candle in both ends'.

That certainly describes me, although I guess it doesn't describe everyone with ME.

When I was at University (which was when my ME started) I used to stay up all night with coffee (admittedly white Nescafe Alta Rica - I was a heathen who drank instant back then...) and chocolate biscuits (well, chocolate bars - I remember that Galaxy Ripple and Cadbury Spira were favourites...) to finish essays and revise for exams. You know what? So did almost everyone else on my course. I got ME and they didn't. I'd love to hear how Dr M explains that. What did I do wrong on my all-nighters that everyone else apparently did right?

The whole "People who get ME are typically perfectionists who stay up all night in order to revise for exams/finish an assignment/meet a deadline" is a classic 'Barnum statement' - it sounds really specific but it's actually general enough and vague enough to apply to most people. Who, if asked the question "Would you stay up all night if necessary to complete an important piece of work?" would reply by saying "Nah - I'd just get a good night's sleep and not bother worrying about the consequences"?
 

Molly98

Senior Member
Messages
576
What did I do wrong on my all-nighters that everyone else apparently did right?
Wrong biscuits maybe? Were you having chocolate hobnobs while your friends had chocolate digestive?
I never stayed up all night finishing essays always been morning person and crap in evening would be asleep by 10pm even with essays due the next day.
Perfectionist does not match my personality, tend to be very laid back and easy going in most areas of my life.
I was happily traveling and chilling out doing not a lot in the rainforest in Malaysia when I first became ill with acute viral infection, so being over worked and over stressed doesn't fit the bill either.
 

barbc56

Senior Member
Messages
3,657
She is suggesting things that might, emphasis on might, help if you are fatigued which we all know is not the same as me/cfs.

If she doesn't know the difference between the two, she's even more clueless than I originally thought.

Sigh.

@mango Excellent find! :thumbsup:
 
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