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

[Barry53]

The trouble is that I don't think Myhill has been sufficiently rigorous in some of her own claims about CFS and how to treat it. She's really not the right person to lead criticism of PACE imo. (Not watched this video yet).

Please do watch the video @Esther12. It's not about her own science, but about someone saying many of the things others want to say ... but she just comes right on out with it, no messing ... just have to get over the first few seconds where she ums and aahs a bit. As a piece of advocacy digestible by Joe Public, it will be hard to beat.

The people she will educate here, will be ones who know little of any of the science, no matter who's it is, but people with a misguided understanding of the general ME/CFS scene.

 

[wdb]

Please do watch the video @Esther12. It's not about her own science,

Apart from when she asserts as fact that ME results from occupational hazards, exposure to workplace chemicals or breast implants. Has any of that been tested in a scientific trial ?

 

[slysaint]

A couple of factual errors on the PACE study costing £8m and the appeal going as far as the Ombudsman but otherwise excellent.

and Queen Elizabeth college(?) QMUL

 

[NelliePledge]

Apart from when she asserts as fact that ME results from occupational hazards, exposure to workplace chemicals or breast implants. Has any of that been tested in a scientific trial ?

except to be fair she did say that was on the basis of having treated people who had had those exposures so I think she is entitled to say it

 

[anni66]

Apart from when she asserts as fact that ME results from occupational hazards, exposure to workplace chemicals or breast implants. Has any of that been tested in a scientific trial ?

• Her interest started with organophosphate poisoning of Welsh farmers who presented with extreme fatigue/ flu/ muscular weakness and oain :my aunt' s ME is toxin based from working as a hairdresser in 1960s and florist from 1970s- 2006. Significant chemical exposure in her background, and stuck to translocator proteins. I think this is part of the jigsaw for her, but this condition is idiosyncratic. Years of stress due to family issues, depressed immune system and multi vaccinations for trip ti india seems to have acted as a trigger. Myhill no doubt sees many manifestations - she does try to look for root cause which in UK is worth commending in itself.

 

[PhoenixDown]

A couple of factual errors on the PACE study costing £8m and the appeal going as far as the Ombudsman but otherwise excellent.

@3:26 She says the NICE guidelines recommend CBT & GET because of the PACE trial but NICE was already recommending CBT & GET back in 2007.

Anyway I agree with her sentiment even if I don't agree with her treatments.

 

[barbc56]

Apart from when she asserts as fact that ME results from occupational hazards, exposure to workplace chemicals or breast implants. Has any of that been tested in a scientific trial ?

I agree.

I found this video disingenuous. Dr. Myhill doesn't use scientific evidence in her practice of medicine. This is comparable to the pot calling the kettle black.

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.

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.

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

While she does make a few points, there're too many points she makes that are just plain wrong or not backed by science.

I agree with @Esther12 that this could backfire, big time. Maybe someone else would be more effective in pursuing this laudable goal.

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.

 

[helperofearth123]

I agree.

I found this video disingenuous. Dr. Myhill doesn't use scientific evidence in her practice of medicine. This is comparable to the pot calling the kettle black.

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.

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 our community needs to be careful when choosing someone to represent us.

I agree. While it is great to have more attention shone on the criminal fraud that is PACE, from what I can see her treatments aren't based on science. For years she has been advocating mitochondrial failure as the cause, whereas it seems to be something in the blood (from the latest research), not the mitochondria.

 

[barbc56]

Dr. Myhill is absolutely entitled to give her opinion. However,the bigger question is if she will be credible enough to persuade people. I also agree that she has a very appropriate goal in mind.

except to be fair she did say that was on the basis of
having treated people who had had those exposures so I think she is entitled to say it

 

[Wonko]

To me she came across as a bit of a loon, many errors, both factual and of judgement, in this video. IMO.

Having had M.E. for decades I am broadly sympathetic with her aims, but regardless I think lumping several "disputed" fatigue illness all together in a single presentation and claiming they are basically the same just makes her sound a bit mad.

Add in a few unconventionally presented "facts", such as the cost of PACE, and the impression is so bad no one's even going to bother checking anything, so it doesn't work for that either.

Sorry

 

[wdb]

I can understand why she is so popular, 80% of what she said in the video was fantastic; it's everything we've always wanted to hear coming from doctor.

As a person to lead a campaign against doctors prescribing treatments that are not supported good quality evidence though I really can't think of anyone much less appropriate.

 

[alex3619]

Any factual mistakes made in a claim will be seized by the proponents of the opposing view and used in their aggressive response.

Typically with those opposing PACE I do not see major issues in the science, but rather in the politics. Political debates are not necessarily reasonable, they are about persuasion.

Whether or not there are factual errors or exaggerations or complex unexplained issues does not detract from the courage to stand up and demand accountability. Myhill's actions are commendable for that reason.

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.

Instead of just complaining, could anyone who finds factual errors please pass them along to Dr. Myhill? The same goes for clarification requests. Maybe we could send them to someone here who knows Dr. Myhill and pass along the full list.

 

[Jonathan Edwards]

To me she came across as a bit of a loon, many errors, both factual and of judgement, in this video. IMO.

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.

 

[Demepivo]

The trouble is that I don't think Myhill has been sufficiently rigorous in some of her own claims about CFS and how to treat it. She's really not the right person to lead criticism of PACE imo. (Not watched this video yet).

Yes, Myhill is rather to easy to discredit given the GMC hearings.

Getting the facts wrong does not help either

1 the cost
2 calling QMUL Queen Elizabeth University
3 implying PACE principal investigator was Imperial Lord Wessely.

Weasely & Team PACE can simply critique Myhill's own record & sloppy fact checking :S

 

[barbc56]

Instead of just complaining, could anyone who finds factual errors please pass them along to Dr. Myhill? The same goes for clarification requests. Maybe we could send them to someone here who knows Dr. Myhill and pass along the full list

Good point. However the GMC pointed out errors so she might be defensive. I am speculating here.

I don't quite see posts here as just complaining and do serve a purpose as some here may not know Dr. Myhill.

But then I think the bigger question is even changes some of these errorsi,should she be a spokesperson for this cause.

I do appreciate her wanting to do this.

 

[A.B.]

But then I think the bigger question is even changes some of these errorsi,should she be a spokesperson for this cause.

She has the passion, but not the credentials. Someone who prescribes highly speculative treatments and has had a lot of legal troubles isn't the best choice. It has to be someone from within the system.

 

[Countrygirl]

It has to be someone from within the system.

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.

 

[alex3619]

Weasely & Team PACE can simply critique Myhill's own record & sloppy fact checking :S

I don't think there is any doubt about this. The politics is where we usually fail. Even if we get everything right they will find things to criticize. They do not have to prove they are right, its about creating doubt.

 

[Jan]

She has the passion, but not the credentials. Someone who prescribes highly speculative treatments and has had a lot of legal troubles isn't the best choice. It has to be someone from within the system.

I can't see anybody else offering though, if it's either Myhill or nothing, I will gladly take Myhill.

 

[arewenearlythereyet]

I like her enthusiasm and passion, but also think she is a bit of a loon I'm afraid and very inconsistent. I think she would rapidly be picked apart if interviewed and unfortunately she does have some juicy tidbits for journalists to switch the tables on her.