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

Messages
15,786
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.
They weren't off-topic, though perhaps tongue in cheek. Dr Myhill was quoted on page 4 of this thread as follows:
Dr 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.

If someone is confused, they can always ask what's going on instead of having the comments deleted :p
 

Snowdrop

Rebel without a biscuit
Messages
2,933
I've been thinking about this (over coffee and biscuits).

The posted Myhill video is good (with exception of the three? factual errors that I heard). I don't really have an issue with the triggers she mentions as leading to ME.

Perhaps this can be separated from the political/social justice issues around ME. If the advocacy is not focussed around Dr Myhill I think I could feel comfortable convincing anyone I know in the UK to participate by signing.

I'd like to consider more on what what wide support of this might look like and what it could accomplish. And also on the other hand what problems might there be in advocacy led by Dr Myhill.
 

Mij

Messages
2,353
Does anyone not find it odd that Dr.Myhill states that a "major" reason that so many cases of CFS are caused by 'occupational hazards'?

"silicon breast implant fatigue syndrome", '9/11 syndrome" etc yet never mentions viral infections. She also says they all switch on autoimmune diseases. We don't know if M.E (as I call it) is autoimmune at this point.

I'm confused.
 

Manganus

Senior Member
Messages
166
Location
Canary islands
Does anyone not find it odd that Dr.Myhill states that a "major" reason that so many cases of CFS are caused by 'occupational hazards'?

"silicon breast implant fatigue syndrome", '9/11 syndrome" etc yet never mentions viral infections. She also says they all switch on autoimmune diseases. We don't know if M.E (as I call it) is autoimmune at this point.

I'm confused.
No, not really. One has to understand the difference between science and clinical experience.

Dr. Myhill states what she believes. It is clearly her own interpretation of her own experience. And must be evaluated as such.

If this is helpful or not is not easy to determine.

But she might be right.
On one point, ...
or on many.
 

Skycloud

Senior Member
Messages
508
Location
UK
Does anyone not find it odd that Dr.Myhill states that a "major" reason that so many cases of CFS are caused by 'occupational hazards'?

"silicon breast implant fatigue syndrome", '9/11 syndrome" etc yet never mentions viral infections. She also says they all switch on autoimmune diseases. We don't know if M.E (as I call it) is autoimmune at this point.

I'm confused.

I think there's confusion in part because of the murkiness created with the invention of CFS as a term. It's whole purpose was obsfucation. ME is one thing; CFS is another, or several other, things. This really doesn't help.
 

Mij

Messages
2,353
My sister who has Hashimto's came to visit just recently (she works in Ryadh) and was feeling warmer and more 'fatigued" than me, she needed to rest quite often. She constantly needed the A/C on and I was just peachy cool.

It was kind of weird considering I've been disabled for 26yrs., heat intolerant but wasn't 'tired', I just couldn't walk or stand for very long.

She even asked me to make her breakfast :eek:
 

IThinkImTurningJapanese

Senior Member
Messages
3,492
Location
Japan
I think there's confusion in part because of the murkiness created with the invention of CFS as a term. It's whole purpose was obsfucation. ME is one thing; CFS is another, or several other, things. This really doesn't help.

I once believed that ME was a better name than CFS and the UK must have a better understanding of this illness.

Then I lived there.

I now refuse to say that my problem is ME.

Different letters, same cowardly purpose.
 
Messages
63
Location
Oxfordshire, England
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.

having heard Sarah speak a couple years ago, I remember how fast she spoke, would have left many listeners in the dust. As I don't have ME I was fine, but I did wonder if some would have struggled to follow. I would encourage her to slow down massively-- it can be done, just needs some practice.
 

sianrecovery

Senior Member
Messages
828
Location
Manchester UK
having heard Sarah speak a couple years ago, I remember how fast she spoke, would have left many listeners in the dust. As I don't have ME I was fine, but I did wonder if some would have struggled to follow. I would encourage her to slow down massively-- it can be done, just needs some practice.

I will definitely feed that back to her, thanks!
 

sianrecovery

Senior Member
Messages
828
Location
Manchester UK
I once believed that ME was a better name than CFS and the UK must have a better understanding of this illness.

Then I lived there.

I now refuse to say that my problem is ME.

Different letters, same cowardly purpose.

Exactly so. I did a clip when we started the channel on CFS and shame, and I deliberately used the hated CFS title because that was the diagnosis my friend who I was discussing lived and died with, and where so many people start from when they begin investigating the condition post-diagnosis.
 

sianrecovery

Senior Member
Messages
828
Location
Manchester UK
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.

Thank you so much for saying what I wasn't eloquent enough to say myself. Dr. Myhill is as far as I know the only practising UK doc who will stand up and say that ME is an illness, not a psychological problem. And that has to mean something.
 

sianrecovery

Senior Member
Messages
828
Location
Manchester UK
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 likesI 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.

I'm fine with criticism of my filming - I want to improve. And thanks for the factual corrections, we have put them in the copy, and I will more carefully fact check the next clips I film. Dr. Myhill made these pieces at my request; she's not trying to put herself forward as a spokesperson for the whole community. As for those on this thread that have called a quack, a lunatic, clueless, etc etc. I find bewildering that the one practising doctor in the UK prepared to go to bat for us evokes such hostility. I find Sarah to be a well-read, sane, and humane and effective clinician, and she has tolerated years of harassment in order to keep treating PWME.
 

sianrecovery

Senior Member
Messages
828
Location
Manchester UK
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.

funny you should say that, I've just had a big biscuit use-up. And they were chocolate biscuits too...;)