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

Stewart

Senior Member
Messages
291
I have long been of the view that we need not just a public inquiry, but a full Royal Commission with broad powers to compel testimony. Its unlikely to happen, but that does not mean we should not push for it. Even just demanding one and failing to get an inquiry is a plus for advocacy.

I think you're right to say that a public inquiry (let alone a Royal Commission) is unlikely to happen. I would go further though, and say that at present the odds of one being established are so vanishing small as to be practically non-existent. I explained why I thought this in a post I wrote back in April...

Stewart said:
In the UK, public inquiries only get announced when there is existing widespread and ongoing concern (and anger) about an issue or episode. That issue needs to be stuck near the top of the news agenda, with successive media headlines screaming "This is a disgrace!" and "Something must be done!". It needs to be a major topic of disquiet in homes, workplaces and pubs, with the public clearly of the opinion that something untoward has happened and that there are questions that need answering. There needs to be no other easy steps that Government can take to soothe public concern and assure people that the situation is under control.

That's when you get a public inquiry - when there is widespread concern and the Government has no other way of making the issue go away. In order to assuage the public they say "We'll have a big, open independent enquiry into what has happened, blame will be apportioned and lessons will be learnt so this can't happen again". You don't get a public inquiry just because a handful of people - even a very large handful of people - go to their MP and ask for one. No widespread and vocal public concern about the treatment of ME = no chance of getting a public inquiry on the issue.

Regrettably I think that campaigning for a public inquiry at this time will be a waste of ME sufferers' time, effort and precious energy - and all those contacts with MPs could be put to much better use. Dr Myhill's enthusiasm is commendable - I'm sure she has patients' best interests at heart and desperately wants to see a sea change in how the UK treats ME/CFS - but I'm worried that she doesn't seem to have much understanding of how you successfully build political support for a campaign or issue. You certainly don't start by asking MPs to call for a public inquiry when there's no widespread outrage to back up the campaign - and consequently no prospect of the campaign getting anywhere.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Of course we all love it because she's preaching to the choir. I wonder what it looks like to someone who doesn't know much about M.E.? I wasn't going to say it, but seeing as "bit of a loon" has already been mentioned ...

I actually gave up listening to it within the first minute, and only went back to listen to the rest after reading the first few posts on this thread. She seemed breathless and in such a state she could hardly get her words out, almost as if she had been dwelling on matters all afternoon, then thought "sod it, I'll make a video" at around tea-time and done it in one take just to get it all off her chest. If she wants to lead such a grand campaign it would have been worth checking a few facts, preparing a script or at least a structure and notes with keywords, taking a deep breath, calming down and having a couple of practice runs before pressing record.

I know she has her fans, but she also has a history where she has sometimes appeared (to me) to be a bit of a self-dramatising quack. There, I've said it. She'd certainly be a very divisive person for M.E. sufferers to try to rally around, and could end up being even more of a liability than Coyne if she can't be bothered to get her facts straight.

I don't doubt her motivation or her passion, but it would be nice if she had some science and a better track record to back it up with. She'd be a gift to the psycho social club, giving them the option of distracting from our main arguments by focusing on her many past unsubstantiated claims about treatments etc.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
It would cost them their careers and respect from their colleagues.

It would demand a very high degree of integrity and dedication to patients for someone within the system to risk so much by becoming our champion. Very few people, if any, would volunteer for such a role if they are employed by the NHS..

Only retired doctors could seek to expose the abuse of ME patients.

So what is wrong with retired doctors, Countrygirl? I can think of at least nine people who are already doing their best to expose the abuse of ME patients in the UK. They meet and lobby relevant people and write articles and do everything they can to push the agenda forward without screwing up the politics. The problem as I see it at the moment is that even within this group of people there may be too many different messages. I think that is being ironed out by constant discussion but there is a way to go. The last thing we need is someone whose track record in science is even weaker than the PACE group to sound off as if what was needed was alternative medicine and that the problem with PACE is that it is conventional science. It makes a laughing stock of everyone.

I suspect I spend a lot more time than Dr Myhill does working for PWME behind the scenes. I needn't bother because I do not earn money from it, but sometimes it isn't easy. We all know several people to whom that applies fivefold.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
She overemphasizess environmental triggers.. While these may be a factor she neglects to name other causes that are more likely to be a triggering factor. This would give her more credibility.

I really can't agree with this this @barb56. Environmental triggers, mainly organophosphates and prior to their widespread use, organochlorines, were a major cause of ME in the UK. Week after week in the 90s, the excellent Christopher Booker wrote a column about it in the Sunday Telegraph to raise awareness. The Guardian then did an enormous several page spread on the subject. As an aside, the antibiotic septrim was also accepted as a cause of ME in some at the time and they were paid compensation. It was then re-marketed as Bactrim.

I live in sheep farming country, and a large number of farmers developed ME through dipping their sheep.......as did the Countess of Mar who serves us so well in the House of Lords...................A huge number of them joined the ME group I chaired and we even managed to organise lectures by Professor Behan's team on the subject of OP ME in the Post grad medical centre locally which attracted the largest audiences in the history of the hospital .Doctors were having to sit on the floor as the theatre was full such was the interest from the medical profession. Then along came Wessely..............killed the interest stone dead and all help was denied leading many of the farmers to commit suicide. Dr Byron Hyde refers to environmentally-induced (OP mainly) ME as Secondary ME.

Ironic how she mentions being brought before the GMC then mentions other doctors who have lost their licenses. Doctors who appear to be diagnosing and treating illnesses that are not supported by science.

I think you are referring to the excellent Dr Nigel Speight, Dr Kerr, Dr Wright and Dr Skinner who have been enormously helpful to patients and about the only ones who have supported and improved the lot of patients who are being subjected to ..............well, I liked the term I heard mentioned by a US advocate to a government department a few weeks ago.............'Murder by Negligence'. Thank goodness that we at least did have some doctors who had sufficient integrity to stick their heads above the parapet.................I don't think there are any left working for the NHS now who have the courage of their convictions and are prepared to support patients, although there will no doubt be some who are not known to the main ME population. The tiny handful who are helpful are in private health to my knowledge.

As far as breast implants, you would think there'd be more cases of me/cfs in Hollywood. :lol:

ME used to called the Hollywood Disease as so many were ill some years ago. Thank you for raising the subject of breast implants as I hadn't considered that they may have been the cause. I think at one stage it was also called the Hollywood Screenwriters' Disease.

I know many here have reported improvements with their health and like her. That's fine and we are free to make our own health choices. BIMO, I think our community needs to be careful when choosing someone to represent us.

I agree, but sadly we don't have the luxury of 'choosing'...........I can think of only three who could take such a role............and I don't think they are interested. Hopefully there are others who will surprise us.
 
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Countrygirl

Senior Member
Messages
5,429
Location
UK
"Jonathan Edwards, post: 890249, member: 11588"]So what is wrong with retired doctors, Countrygirl?

Ha! I didn't mean it that way! :)

I was making the point....obviously badly................that only retired doctors can safely champion the patients without being subjected to professional censor. For example, I know of a couple of consultants in my local hospital who do understand that ME is a serious and genuine organic illness, but they said they dare not let their colleagues know and cannot support patients as they would be treated with the same derision with which the ME patients are subjected. To speak out against the culture of denial in the hospital would damage their careers. (It is the home of the Muppets, if you recall that story)

I can think of at least nine people who are already doing their best to expose the abuse of ME patients in the UK. They meet and lobby relevant people and write articles and do everything they can to push the agenda forward without screwing up the politics.

That is good news! Thank you for sharing it.

I suspect I spend a lot more time than Dr Myhill does working for PWME behind the scenes. I needn't bother because I do not earn money from it, but sometimes it isn't easy. We all know several people to whom that applies fivefold.

A massive thank you! Your work for us is hugely appreciated and it gives us some hope at last. Bit late for us ole timers who are 40 years down the track, sadly, but it is reassuring to know that this horrible situation will be remedied at last and the younger generation may have a chance of life.
 

Molly98

Senior Member
Messages
576
Personally, I think that people are being a bit too judgemental and critical of Sarah Myhill, I find it quite belittling and rediculing of her and I feel this is unfair to someone who is clearly incredibly moved by our situation and the abuse she sees to passionately speak out.

Yes she came over as quite emotional in the video clip, but it IS emotional and it needs to impact people on that level to make a difference.

Her emotions I beleive are 100% genuine, she deals with patients day in day out and quite frankly I do not give a shit what has caused their illness and whether it is true ME or not, they are human beings, they are patients, they are suffering and struggling and they are facing the same predjudice and mistreatment precisely because they have the same label as us, ME CFS or something that falls under the MUS umberella.

Can you even begin to imagine the impact of being called up infront of the GMC that many times and how emotional and stressful that would be? So yes talking about it on camera will be emotional, yes it does come with strong feelings. This is a hugely emotional issue for doctors and patients.

Yes the level headed science is needed but so to is the very human, very real impact. people do need to see the impact, that is what will change many peoples views on this disease, the human side of the story.

Sarah Myhill helps patients not just with their health but as far as I can see she help support them with benefits claims etc. She mentions the denial of benefits in the video. She really genuininely tries to help and support her patients and sees the absolute injustice and the deverstation of that injustice.

She is standing up and speaking out strongly and clearly about the abuse of patients.

Just stop and think for a minute, if she was talking about the abuse of old people in care homes, children, MS suffers, AIDs suffers or the abuse of any group in society would we be belittling her for getting a few facts wrong or criticising her, I don't think so, we would see her as a very brave and honourable person. She is in my opinion a very brave and honourable person.

She is standing up for US. She is speaking out for US. She is recognising the institutional abuse of ME CFS suffers, aknowledging it and fighting to put a stop for us. I personally feel gratitude for her courage and her trying to stop this.

I do not know Sarah Myhill, I have not been treated by her. I have read her stuff and I have tried following her protocol some years back. It did not work for me, but it seems to bring improvements for many.

She does follow the science, unlike the bps lot, she is not a denier of science and mainly she is using nutrition and supplements to help people, I don't see this as quakery, nutrition and supplements can make a big difference to peoples health, how is this quakery? and as we have no medical treatments yet in the UK, this may be the best option available to us to support our bodies as much as possible, many of us do use diet and supplements.

She is a voice standing up and saying this is wrong, this is abuse and it needs to be stopped. I do not view her as a leader of the ME campaign, but she is one voice, with a lot of experience of seeing patients and how they are impacted by the establishment view on ME.

She is speaking out against GET, CBT and PACE, she is on our side.

She is going to carry on doing what she is doing because she can not sit by day after day witnessing the abuse and suffering, so she is doing what she can do and she is saying no more, this is her true character, and to me, this shows someone of true integrity and character. And bloody good on her for that. She can't and won't turn a blind eye or keep quiet, good, she can't tolerate day after day seeing such abuse, Good. That is the type of person we need more of in this world.

I also do not feel this is quite the right time and I feel that calling for a public enquiry may be more sucessful coming from someone who the establishment are less likely to ridicule and target, but hell we are doing that ourselves on here, to someone who has been moved to take action because she finds the abuse that happens to US so wrong.

Perhaps reaching out to her, relaying any concerns regarding the campaign, making suggestions, including her, working with her as an ally may be a better option.

There are people who know the science better than she does, they can bring their strengths.

There are people who know the history and facts better, they can bring their strengths.

Sarah Myhill has shown her strength over and over and over standing up and speaking out against the mistreatment and abuse of ME patients. She has guts, strength, resolve and determination few others do.
That is a strength that should be recognised and made use of especially when us sufferers lack the energy to do what she is doing.

Many of us, me included condem AFME and critercise MEA for sitting on the fence, not speaking out strongly enough, not saying it how it is, not taking a stand, well here is a woman who does and continually risks her whole career and business to do so.

we should come together, work together, we don't have to see eye to eye on everything but we do see eye to eye on the main things, what happens to ME patients is abuse, and PACE, GET and CBT are a pile of shit as far as this disease is concerned.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I agree, but sadly we don't have the luxury of 'choosing'
We do. We can choose whether this is a good idea, whether it is the right time, and whether she is the right person.

One option is that for lack of support this project doesn't get off the ground and doesn't go anywhere. That might be the best choice, if the alternative is a pointless campaign that could cause more problems than it's worth, for example by undermining and distracting from other more considered lines of advocacy.

When Coyne came along we didn't have much of a choice, but things are very different now.

I have signed contracts in the past containing clauses that I knew were invalid and unenforceable (but my landlord / customer didn't) because I couldn't be bothered getting into an argument about an objectionable clause when it wouldn't matter anyway. If what @Stewart says is correct, I wonder if some of the MPs who have signed up to this have taken the same approach - just sign it and look good because they know it'll never lead to anything.

Just stop and think for a minute, if she was talking about the abuse of old people in care homes, children, MS suffers, AIDs suffers or the abuse of any group in society would we be belittling her for getting a few facts wrong or criticising her, I don't think so, we would see her as a very brave and honourable person. She is in my opinion a very brave and honourable person.

There isn't a psychosocial network that has been embedded into the establishment for the last 30 years running a successful media campaign that old people just think they're old and all they need to do is to go to a rock festival every weekend and they'd stop complaining about not being able to hear anything, and when they get back to the home they should find themselves locked out, so your analogy doesn't really apply.

We are in a very special situation. If abuse is discovered in care homes or with children the public condemnation follows quickly as a matter of course, with M.E. it doesn't, and we have a bunch of people pushing the other way who are ready to pounce on every mistake to undermine our credibility and continue peddling their lies.

She does follow the science, unlike the bps lot, she is not a denier of science and mainly she is using nutrition and supplements to help people, I don't see this as quakery, nutrition and supplements can make a big difference to peoples health, how is this quakery?

I'm not going to bother looking it up, but from memory she's made irresponsible claims about vacinations that she was forced to remove from her website, and has claimed that patients denied her care were in danger of committing suicide, a claim that was later found to be well dodgy.
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
@Molly98

All good points but........

Linking multiple conditions that are disputed in the public mind, regardless of their reality, cause, or commonalities is IMO a bad idea and came across like old tymey quackery. If it came across like that to me then it will have done to people not affected, with no knowledge of any of them.

Add in the £8 million figure when a simple google says £5 million and, regardless of which figure is right, it looks like either a deliberate exaggeration or that she doesn't know what she's talking about well enough to get the basic figures correct - not a good thing for a doctor arguing that the system is broken, that multiple conditions have a similar source etc.

My mother died of MS, which she was convinced (I don't know why, if she was told by a specialist or whatever) was caused by organophosphates, I am fully aware of the probable reality of such connections, but the general public is not, so a long list of such different sounding causes all leading to ......... is IMO asking to stretch the public's reality too far in a single step.

Add in a list of "discredited" doctors and it is IMO asking far too much of the public, it sounds like a conspiracy theory, people don't like conspiracy theories that challenge their views of who is safe, reliable and to be trusted - e.g. the NHS, regardless of reality they will switch off mentally.

I don't think anyone doubts Dr Myhill's motivation, dedication or intent, but this particular video could have been done a lot better, a little bit of planning and scripting would have helped. This sort of output "might" be okay for preaching to the converted, pwME, but as an attempt to garner support from the general public/MP's......it will be ignored, at best.

Sorry, I wish I could be more positive about it, but......
 

Chrisb

Senior Member
Messages
1,051
Perhaps it is not surprising that doctors with the condition do not wish it to be known amongst their peers.

I came across this:

"The disease has a high predilection for medical personnel and for those in social classes 1 and 2......these facts may be taken as further evidence of its hysterical nature........An increased incidence of pre-existing neurosis among sufferers has also been reported."https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1

The post-viral syndrome. a review Archer.

Clearly he knew something about the medical profession that we don't.
 
Messages
2,391
Location
UK
I live in sheep farming country, and a large number of farmers developed ME through dipping their sheep.......as did the Countess of Mar who serves us so well in the House of Lords...................A huge number of them joined the ME group I chaired and we even managed to organise lectures by Professor Behan's team on the subject of OP ME in the Post grad medical centre locally which attracted the largest audiences in the history of the hospital .Doctors were having to sit on the floor as the theatre was full such was the interest from the medical profession. Then along came Wessely..............killed the interest stone dead and all help was denied leading many of the farmers to commit suicide. Dr Byron Hyde refers to environmentally-induced (OP mainly) ME as Secondary ME.
Possibly the point at which people in high places decided some truths had to be suppressed, and needed a pet snake to expedite it for them.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Possibly the point at which people in high places decided some truths had to be suppressed, and needed a pet snake to expedite it for them.

The Guardian article of several broadsheet pages and Christopher Booker in the Telegraph covered this in detail and came to the same conclusion. The evidence was in fact overwhelming and the tactic very successful.
 

NelliePledge

Senior Member
Messages
807
I don't think this campaign will achieve its aim of a public enquiry.

I don't object to it tho on the same basis I don't object to Coyne being outspoken. I think it is good that there are people who are coming out fighting using terms like criminal and fraud in public as it contributes to gaining publicity and propagating wider awareness and doubt about PACE. Doubts about PACE mean that CBT and GET will go and the stranglehold of BPS will be gradually released.

In any political movement there are always so called hot heads who are more radical (and usually unrealistic). This makes the mainstream voices seem more sensible and people that those in authority can engage with. If this Campaign identifies some MPs who are potentially interested in ME that's good as I'm sure the Countess of Mar can then brigade them into a new All Party Group. If it gets publicity I don't think that's negative either like the old fart stuff it gets ME on the radar. This movement needs people working on different aspects of the political system behind the scenes and in public. And radical voices definitely have a role in that making things uncomfortable for the establishment. The more radical the radicals are the more radical the mainstream can be and still be seen as moderate. We're never all going to agree on everything but that isn't necessary to in order to get change.

Change isn't likely to be revolutionary though. Realistically what will happen in the UK about moving away from official backing for CBT/GET is probably going to be a lot more low key than we would want. Look at US CDC guidelines change that wasn't even announced.

It was interesting in the local TV interview that @keelatoo Sally did in NI with Clare Ogden from AFME that AFME are working on a programme of engaging with commissioners to work out how many people in their areas have ME and what services there should be. EG possibly more people like this guy in Scotland who is an ME/CFS specialist nurse. I actually think this isnt a bad idea whatever think of AFME because ME isn't on commissioners radar other than being influenced by the utter rubbish material the Muppets put out so breaking down that monopoly would be worthwhile.


Even when there is a confirmed medical treatment it still needs to be implemented and the more work raising ME awareness across the press public politicians and within the health service with clinicians and commissioners that has already been done the less difficult that will be.

Sorry meant to say that clearly the work on debunking PACE and BPS scientifically through papers and of course all the biomedical research is central to this. I'm not a scientist I studied politics and work in the public sector hence my ramblings more on the politics around it.
 
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snowathlete

Senior Member
Messages
5,374
Location
UK
So what is wrong with retired doctors, Countrygirl? I can think of at least nine people who are already doing their best to expose the abuse of ME patients in the UK. They meet and lobby relevant people and write articles and do everything they can to push the agenda forward without screwing up the politics. The problem as I see it at the moment is that even within this group of people there may be too many different messages. I think that is being ironed out by constant discussion but there is a way to go. The last thing we need is someone whose track record in science is even weaker than the PACE group to sound off as if what was needed was alternative medicine and that the problem with PACE is that it is conventional science. It makes a laughing stock of everyone.

I suspect I spend a lot more time than Dr Myhill does working for PWME behind the scenes. I needn't bother because I do not earn money from it, but sometimes it isn't easy. We all know several people to whom that applies fivefold.

Thanks for the work you and others do. I am sure patients only see the tip of the iceberg. How do we increase the number of people involved? Particularly doctors who are not retired? I wonder if there is some way interested doctors could get involved without exposing themselves to situations that could damage their careers. As others have said, i think there are interested and sympathetic doctors out there who feel unable to risk getting involved. I think I have yet to hear of a single working doctor who has got involved and not faced some kind of attack from the BPS lobby.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Thanks for the work you and others do. I am sure patients only see the tip of the iceberg. How do we increase the number of people involved? Particularly doctors who are not retired? I wonder if there is some way interested doctors could get involved without exposing themselves to situations that could damage their careers. As others have said, i think there are interested and sympathetic doctors out there who feel unable to risk getting involved. I think I have yet to hear of a single working doctor who has got involved and not faced some kind of attack from the BPS lobby.

I think the opportunities for doing things only crop up intermittently and then it helps if half a dozen well placed people respond in unison. Most physicians are not going to be in a position to do anything other than share their views with colleagues locally or over dinner at meetings. Recently opportunities have been coming up fairly often, with NICE and Cochrane and JHP etc. Charles is often first off the mark and does a good co-ordinating job and various others can be relied on to weigh in. We seem to have gained some further voices in the last few months.

The standard problem, which I heard of yet again yesterday 'he was monstered by a knight-psychiatrist' is now out in the open with the media and I have a feeling it is not going to work much longer. The sounding off we had from Sharpe and Crawley recently has made them all look pretty silly. But there is a difference between a tipping point and a clear downhill run. For the moment the best recruits to the cause may be some heavyweight emeritus people from other disciplines like epidemiology and statistics. Some names are being mooted but it is holiday season just now.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Clinical studies have continued to suggest a relationship between silicone breast implants and chronic fatigue syndrome. Extensive epidemiologic studies, however, indicate that such a relationship is likely to be by chance and the successful lawsuits against producers of silicone breast implants are based on factors other than scientific proof. We present several perspectives on this issue which are probably relevant to other reports of putative etiologic agents for chronic fatigue syndrome.
Source: Levine et al, (2011).

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. To the best of our knowledge this is the first case of combined adverse effect to vaccine and silicone. Vaccine safety in individuals with silicone implants requires further studies.
Source: Nancy AL & Shoenfeld Y (2008)
Autommune Rev.

CONCLUSION:
Women with silicone breast implants often report severe pain and chronic fatigue. Rupture of the implant is associated with an increase in symptoms of pain and chronic fatigue.
Source: Vermeulen, R. & Scholte, H (2003).

Of 176 women with breast implants examined in a New York hospital, 77% of them report Chronic Fatigue: Source: Seminars in Arthritis and Rheumatology 24:1 Suppl 1 [August 1994], 29-37.)
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Perhaps it is not surprising that doctors with the condition do not wish it to be known amongst their peers.

I came across this:

"The disease has a high predilection for medical personnel and for those in social classes 1 and 2......these facts may be taken as further evidence of its hysterical nature........An increased incidence of pre-existing neurosis among sufferers has also been reported."https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1

The post-viral syndrome. a review Archer.

Clearly he knew something about the medical profession that we don't.

Corrected link:
The post-viral syndrome: a review
M.I. Archer
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1710789/ (abstract)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1710789/pdf/jroyalcgprac00029-0021.pdf

This is from 1987. Not a recommendation!