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

Ambrosia_angel

Senior Member
Messages
544
Location
England
Associating a personality type with a physical illness has no place in medicine and is lazy. Because they couldn't be asked, they decide to put perfectionist neurotic personality on the list of symptoms. This is the type of BS the CBT crew push.

I'm just happy medical research is slowly moving forward. A lot has changed in 5 years already
 
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1,478
I guess I'm a perfectionist in that when I was healthy I would eat a whole packet of biscuits in one sitting until there was none left? Perhaps there is a subsection or many subsections of ME types that would explain the biscuit theory?

That could explain why our experiences are so different?

Or pethaps it is a load of mystical crap that should only be peddled in an incense-filled tent at the fair?
 
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15,786
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've also been in the "in bed by 10" camp for my entire life. And didn't start drinking coffee until a couple years after getting sick. I stayed up until 1am, the first time I read Ender's Game, but never to write a paper. I don't do my best work while semi-comatose, oddly enough :rolleyes: No addictions, ever, though I did enjoy a codeine cough syrup a bit more than I'm comfortable with. I've never even smoked or tried illicit drugs. Alcohol intolerance kicked in around the first mixed drink even before ME onset. A daily glass of wine or little cup of sake was about as wild as I ever got.

Well I'm sure she's been very thorough doing the numbers on that anecdotal correlation.
Yeah, ME is not a frigging B12 or protein deficiency. I've had meat at least twice a day for as long as I remember - unless I was having some tofu for fun instead.

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.
 
Messages
2,391
Location
UK
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"?
I think the thought behind the words is being missed here. It's not just if you do it, but if you do it day in day out,and maybe the ongoing effects that has on a person's system, and its ability to keep providing energy in a way that humans have not evolved to cope with. Maybe (it's just a thought-experiment conjecture, I've no qualified knowledge) if a person's body gets driven so hard for so long, perhaps with some other factors thrown in for good measure, the combination tips a person's system over a physiological cliff that it cannot climb back up again.
 
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2,158
But what if different folks react differently - whilst some burn out, maybe others react with much longer lasting consequences?

We can speculate like mad. That doesn't make it true and I can't see how it helps. Sorry Barry. I'm glad you added the question mark at the end, or I might get annoyed with you!

We are the victims of unfounded speculations by Wessely and others.

None of their speculations stand up to scientific scrutiny. The result in enormous suffering, as I'm sure everyone here will agree.
 
Messages
2,391
Location
UK
We can speculate like mad. That doesn't make it true and I can't see how it helps. Sorry Barry. I'm glad you added the question mark at the end, or I might get annoyed with you!
It was phrased as a question and meant as one - if people seeking answers operate in an environment they cannot ask "what if" questions, then healthy debate suffers I think. All I was trying to ask was a thought-experiment question - you know I don't have, nor ever claim to have, the expertise to claim such a thing to be true.

Sometimes answers to questions are found by logical thought progression. Other times, my own work included, problems are solved by lateral thinking, if only to find a fresh starting point for a new line of logical investigation. Squashing such lateral thinking freedom can be dangerous I believe. But I do recognise that "lateral thinking" can also degenerate into chaotic thinking, but can be a fine line! :). And no I'm not (of course) claiming to have big answers to big questions, but I feel healthy debate lives or dies by the smallest of whims sometimes.

I suppose different sub-types is what I was wondering about.

Maybe an oversight of mine is to write a question which I really do mean as a question, but phrasing it how people sometimes frame a statement, as a quasi-question.
 
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Messages
88
Its great that there’s a community which can fight together against shockingly powerful, pervasive and insidious opposition.

We need the cacophony of discussion. The eminent doctors dealing with the establishment; the ones prepared to stay at the coal face, treating people with cfs regardless of often terrible personal consequences; the researchers battling for funds; the organisers; the people who stay calm; the people prepared to be emotional in public; the people who lose their tempers and give the journalists material that gets published in the huge-circulation popular press, not just esoteric journals. Because there are as yet no definitive answers, all of them, all of us, have different perspectives, different weapons to bring to the battle. I find it really sad how ready we are to shoot at our own side.

My partner has ‘only’ had cfs for 3.5 years but the impression I have is that, compared to years gone by, change is in the air, things are happening, a lot is ‘bubbling under’. 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.

Each criticism may have some validity. Nothing is perfect. We don’t need it to be. Nothing will ever convey our whole message in a way everyone will hear. We don’t need it to. We need the glorious imperfection of everyone trying their best in whatever way they can. One Ted talk, one film, one video, one symposium, lecture, radio programme, article, forum post doesn’t create change. But all together - that’s a different matter.

Sarah Myhill isn’t everyone’s cup of tea, but she’s probably treated thousands of people who believe they have cfs. If she says something surprising, she may be wrong … or she may have some basis for it. She’s on our side and the video says things that needed saying. I understand she’s got 30 MP’s on side.

Let’s be constructive in our criticism and aim our firepower at the enemy.
 

Skycloud

Senior Member
Messages
508
Location
UK
@PeeWee well said.
Let’s be constructive in our criticism and aim our firepower at the enemy.

I agree totally with this, but, because of our diversity (or limitations), we will not all support the same initiatives. I'm very hesitant to support Sarah Myhill, and probably won't. However, I hope her campaign helps, since it exists, even though that would kind of prove my reservations wrong.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
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.
You make a lot of valid points and I agree that there is room for many different advocacy approaches. But I'm afraid I don't regard Sarah Myhill as fighting for me, and I don't believe she has any treatments that will help or cure my M.E. Being told to change my personality and go to bed early is f. all use to me I'm afraid.

I know some M.E. sufferers find some relief with biohacking and supplements, I've half-heartedly tried a few myself, but there are also many who regret the false hope and vast expense that this approach can lead to. I wouldn't dream of telling anyone not to try it, but if a Dr is making bold claims about supplements and lifestyle choices then they should be expected to stand up to scrutiny, and I see those doing the scrutinizing as "fighting for us" just as much as anyone else. If she and her claims can't stand up to scrutiny on PR, what on earth is going to happen when she goes charging off on her campaign on our behalf and becomes a target for the Psycho Social Club?

I also think it's unfair to say she's being demolished, there is nothing wrong with discussing whether her claims stand up to scrutiny or whether her track record makes her suitable to lead a campaign on our behalf. As citizens we are allowed to scrutinize and discuss our politicians and vote for which ones get to represent us, and as PR members we are allowed to have and air opinions about those offering treatment and claiming to know what we need, understand us and speak on our behalf. We do it with Phil Parker, Esther Crawley, Ron Davis, David Tuller, James Coyne and everyone else. Sara Myhill doesn't get a free pass.
 
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2,158
It was phrased as a question and meant as one - if people seeking answers operate in an environment they cannot ask "what if" questions, then healthy debate suffers I think. All I was trying to ask was a thought-experiment question - you know I don't have, nor ever claim to have, the expertise to claim such a thing to be true.

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.
 

Stewart

Senior Member
Messages
291
I think the thought behind the words is being missed here. It's not just if you do it, but if you do it day in day out,and maybe the ongoing effects that has on a person's system, and its ability to keep providing energy in a way that humans have not evolved to cope with. Maybe (it's just a thought-experiment conjecture, I've no qualified knowledge) if a person's body gets driven so hard for so long, perhaps with some other factors thrown in for good measure, the combination tips a person's system over a physiological cliff that it cannot climb back up again.

But what if different folks react differently - whilst some burn out, maybe others react with much longer lasting consequences?

I don't entirely disagree with you - in fact I think I was trying to make a similar point (but admittedly with a different emphasis).

Lots of people push themselves the way Dr Myhill describes in that quote. Some people seem to cope with it fine, others burnout (and subsequently recover) and a few get ME. So what's the difference - why is it that a few people who behave in this fashion get ME while the vast majority don't?

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:

a) most people who behave in that particular way - even over an extended period - don't develop ME; and
b) many people who develop ME never behaved that way prior to getting ill

I don't mean to come across as being particularly down on Dr Myhill here - as I said upthread, I think her heart's in the right place and she's genuinely trying to put together the pieces of the ME jigsaw as best she can. However this whole 'personality type' explanation is nonsense regardless of who comes out with it - whether that's Simon Wessely, Esther Crawley or Sarah Myhill - and it needs to be called out as nonsense, even if the person uttering it has the best of intentions.
 
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1,478
Following my flippant comments earlier, I would just like to add that the part I am most interested in finding out is whether ME sub types really exist (excluding misdiagnosis to known things) or whether there are many paths that lead to the same condition.

Knowing this for certain will kill overnight a massive chunk of uncertainty (and hopefully kill a lot of quacking, inappropriate treatments and unnecessary self imposed guilt).
 

Deepwater

Senior Member
Messages
208
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.

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.
 

Jan

Senior Member
Messages
458
Location
Devon UK
Why did the GMC stop Dr Myhill prescribing Valacyclovir? I thought if you saw a doctor privately they could prescribe what they want within reason?
 

Deepwater

Senior Member
Messages
208
Why did the GMC stop Dr Myhill prescribing Valacyclovir? I thought if you saw a doctor privately they could prescribe what they want within reason?

But one man's reason is another man's madness. Since the last fitness to practice case against, her Dr Myhill has been subject to an annual review. Valacyclovir is not specifically licensed for treating ME so she was told to stop forthwith.
 

Jan

Senior Member
Messages
458
Location
Devon UK
But one man's reason is another man's madness. Since the last fitness to practice case against, her Dr Myhill has been subject to an annual review. Valacyclovir is not specifically licensed for treating ME so she was told to stop forthwith.

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

sianrecovery

Senior Member
Messages
828
Location
Manchester UK
Interesting thread for me this. I filmed it. I asked Sarah if she wanted to do a playlist for my youtube channel, and as someone who has been her patient and believes I owe much of my current ability to function to her treatment, I thought it would be an interesting playlist. You're right - its not scripted. There may be errors in it. Its from the heart. But you know what? It exists, despite the odds.

Sarah is not trying to spearhead anything - god knows she's got enough on her plate - she is trying to help the patients she has seen marginalised for decades to find a vehicle to challenge the status quo. She wants ME patients to be able to effectively advocate for themselves, she doesn't want to be the face of that advocacy. She filmed on this BECAUSE I ASKED HER TO.

I might add that she is the only UK doctor that has ever offered me any effective help. And I can tell you as someone who spent years working in mental health - she is one of the sanest people I have ever met. So, thanks for the feedback, I've taken it on board and hopefully when I film with her again, it'll improve the quality of what we get. I might add - I'm not trying to do anything but put more information and consciousness of ME into the public domain. You don't like what I've done - do your own. I don't have a monopoly on the medium.
 
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15,786
She about the least clueless human I ever met. Do tell about all the ME patients you've helped.
Being helpful in one aspect does not make Dr Myhill less wrong in other aspects. And it's rude and fallacious to suggest someone's opinion is invalid solely because they are not a doctor.

It would have been much more helpful if Dr Myhill got her facts right and did work from a script. And avoided making statements attributing ME/CFS to personality and behavioral traits.
 

sianrecovery

Senior Member
Messages
828
Location
Manchester UK
Being helpful in one aspect does not make Dr Myhill less wrong in other aspects. And it's rude and fallacious to suggest someone's opinion is invalid solely because they are not a doctor.

It would have been much more helpful if Dr Myhill got her facts right and did work from a script. And avoided making statements attributing ME/CFS to personality and behavioral traits.

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.