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MAIMES: Would you like a Public Enquiry into the lack of care and treatment for people with M.E?

Molly98

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Unfortunately I imagine you are right. Just feels so incredibly wrong.
Ah, but may be not, just imagine if in a few years time there is effective treatments for ME and millions of ME patients get their health and their energy back, what a well organized force for justice we would be.
Wessely and St Esther and Co should be very worried of us getting our health back, a major reason they have got away with what they have is because we are too ill to effectively protest.. Imagine if we were well enough to take to the streets and to partake in direct action.
 
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TiredSam

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trishrhymes

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That is horrendous. After waffling on about "fatigue" it links to this:
http://patient.info/health/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-leaflet

So fatigue is chronic fatigue syndrome is ME for which talk therapy / CBT / GET may help.
Just read this patient info document. Awful.

Defines ME as persistent tiredness with other symptoms,

says PEM is increased tiredness after activity,

quotes the improvement figures from PACE,

then to cap it all, claims PACE showed 30% full recovery with CBT or GET.

:bang-head:
 

slysaint

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Just read this patient info document. Awful.

Defines ME as persistent tiredness with other symptoms,

says PEM is increased tiredness after activity,

quotes the improvement figures from PACE,

then to cap it all, claims PACE showed 30% full recovery with CBT or GET.

:bang-head:
There is an ME forum on this site............(think I put it on my list).......
anyone registered/ up to joining and finding out what the people there know/don't know and putting them straight on the info ?
 

keenly

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I've never really been convinced by Myhill, although I know she has her ardent supporters. I'm not about to jump onto her bandwagon. Could end up with another Coyne-type situation, ending with lots of emotion and recriminations. If I was choosing a saviour to follow it would be someone like Ron Davis or Jen Brea, not Myhill.
Myhill is brilliant. She has fought for CFS patients as much as anyone.
 

Hip

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By contrast practitioners working outside conventional NICE Guidelines have established many effective treatments which are safe and efficacious and which get people back to work and off benefits.
What utter nonsense
Certain treatments used by ME/CFS specialists are effective in a subset of patients, and have got people back to work.

I would expect that the internationally renowned ME/CFS specialists that use treatments like oxymatrine, LDN, IVIG, Valcyte, Valtrex, etc are able to improve the health of more ME/CFS patients than NHS doctors using the standard NHS CBT/GET treatment for ME/CFS.
 

Laelia

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I appreciate some of the criticisms raised but I'm 100% behind this campaign. It could be hugely beneficial to our cause!

No one appears to have mentioned the all important update on Dr Myhill's website (13 March 2017):

COUNTESS of MAR has joined MAIMES!

She is very much on our side and we all know what a force to be reckoned with she is! Dr Myhill has been in conversation with Countess Mar and this is what the good Countess says of MAIMES:

  • “I am very impressed by your MAIMES campaign and would be very happy to support you.”
  • “You, very cleverly, have brought in other conditions like GWS and fibromyalgia, which is just what the doctor ordered! “
  • “It is high time that there was an inquiry.”
The second point refers to Mar’s reasoning as to why previous such campaigns have failed. ME has been seen as ‘’too narrow’’ a subject for such a wide-ranging Inquiry. This may well be a wrong perception but we have to give ‘’them’’ what ‘’they’’ want to get the whole thing started!

Countess Mar will be bringing MAIMES to the attention of the Forward-ME group at their meeting on 14 March."


You can also see from the update on Dr Myhill's website that a long list of MPs have already been 'adopted' - 56 if I counted correctly. Given that the campaign was only launched in February 2017, this is already great progress. [Note: 'adopted' does not mean that these MPs have signed up to anything, but that a member of the public has signed up to meet them and explain the case for a Public Inquiry].

http://www.drmyhill.co.uk/wiki/Medi...m_source=SocialMedia&utm_campaign=SocialPilot
 
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wdb

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Certain treatments used by ME/CFS specialists are effective in a subset of patients, and have got people back to work.

I would expect that the internationally renowned ME/CFS specialists that use treatments like oxymatrine, LDN, IVIG, Valcyte, Valtrex, etc are able to improve the health of more ME/CFS patients than NHS doctors using the standard NHS CBT/GET treatment for ME/CFS.
I thought the most rigorous clinical trial to date of antivirals found them to be almost completely ineffective for ME/CFS.
 

Hip

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I thought the most rigorous clinical trial to date of antivirals found them to be almost completely ineffective for ME/CFS.
Which trial was that? Is that something recent?
 

wdb

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I believe that trial of Valcyte generally found it has beneficial effects in ME/CFS.
Found Some discussion if it here, personally I don't consider a treatment that is not significantly better than no treatment to be effective but that is just my interpretation.
 

Valentijn

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Found Some discussion if it here, personally I don't consider a treatment that is not significantly better than no treatment to be effective but that is just my interpretation.
It wasn't better for results on one fatigue scale, but was was significantly better on several other measurements:
VGCV patients experienced a greater improvement by MFI-20 at 9 months from baseline compared to placebo patients but this difference was not statistically significant. However, statistically significant differences in trajectories between groups were observed in MFI-20 mental fatigue subscore (P = 0.039), FSS score (P = 0.006), and cognitive function (P = 0.025). VGCV patients experienced these improvements within the first 3 months and maintained that benefit over the remaining 9 months. Patients in the VGCV arm were 7.4 times more likely to be classified as responders (P = 0.029). In the VGCV arm, monocyte counts decreased (P < 0.001), neutrophil counts increased (P = 0.037) and cytokines were more likely to evolve towards a Th1-profile (P < 0.001). Viral IgG antibody titers did not differ between arms.
 

wdb

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It wasn't better for results on one fatigue scale, but was was significantly better on several other measurements:
They measured 16 different outcomes, 14 of which showed no significant difference and 2 of which showed a small significant improvement. Overemphasising the two exceptions is textbook p-hacking. I'm still of the opinion the outcome was largely negative and way way short of justifying claims like practitioners working outside conventional NICE Guidelines have established many effective treatments which are safe and efficacious and which get people back to work and off benefits.
 

Jan

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Will this enquiry also be looking into the CMRC and previous bodies involved with research? I really believe the continued funding of the BPS school of research at the expense of all other research, even after the CMO's report calling for more biomedical research, needs an public enquiry itself.
 

Cinders66

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I don't accept that ME has to be lost in CFS then lost in MUS and treated as psychological until we can conclusively prove with a bionarker or definitive cause - effect research that this illness is so and so. Biding our time until then, as someone said, is fine if you're mildly affected, not an option if you're long-term severe.

Key things we could do to counter this:
1) get ME out of CFS (we should never have accepted the CFS label and the oxford criteria etc in the first place) by highlighting disability, PEM , multi symptoms especially pain - anything to get away from the idea that ME is pervasive tiredness of unknown (possibly psychological) cause, which is so damaging.
2) use the IOM report to carve a better pathway for ME based on the indisputable starting point that this is a multi system physical disease - and the body of evidence that supports this regardless of there still being lots to understand
3) do whatever else needs doing to get PACE reseukts seen for what they were and highlight that CF research with exercise isn't transferable to the more sick and impaired ME population
4) highlight the severity and get case studies and media out there that make the whole "fear/avoidant" , depressed, deconditioned argument (a lousy argument so how is it defeating us?) look ridiculous. If people watch the forgotten plague for example I don't see how status quo - mind/body until concrete evidence can continue. I don't see how people can see the lived examples of ME and think that person just needs exercise or that person isn't that sick. The CBT NHS approach has only flourished because the severe have been ignored. If the severe, who are blatantly sick and without specialist care & any effective treatment are highlighted then this MUS lumping approach looks ridiculous
5) simply not accept the unacceptable. ME is not well served by being lumped in with unexplained back pain and IBS and treated by psychiatrists, it's as simple as that.
 
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Molly98

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When I first heard of this campaign, I thought great, an inquiry into the abuse and neglect of ME patients is so badly needed. There needs to be some sort of recognition of the harm done, in order for institution and individuals and the public to learn from it and move forward in a better direction and make sure this never happens again.

I would like to see justice for many ME patients who have been so badly treated and this looks like a step in the right direction towards getting that initial vital acknowledgement of what has happened and hopefully address the current BPS model that is so harmful.

But upon reflection and on reading through the comments I do wonder now if this is the right timing and the right person to do this.

Timing is crucial and I am not sure if this is ultimately the best time.
I think given another year or two of research hopefully things will have progressed to the stage where more is known and the biomedical facts are undisputable.

To many of us, that appears to be the case already, but to those outside the ME world, the BPS brigade are going to continue to argue will full force that it is not indisputable and there is an alternative theory and understanding of ME. They will continue to do this until their situation becomes absolutely untenable. The difficulty is that they have the use of the media and they will use it just as they have before.

We are the weaker party, we have to think tactically, strategically and longer term.

Imagine how they will portray a campaign led by Sarah Myhill.
Her treatments may help some but not all, but they will portray her as some hippy alternative quack, they will use the media to discredit her and her practices and in doing so discredit the campaign. The first image the media present will stick and could take years to undo and of course, it will be whatever image the BPS lot want to portray to protect their interests.

It is unlikely that if this fails, we will be abe to start a similar campaign in the near future, MPs etc won't want to give it another try, the public will be tired of it as will health professionals.

I like the idea of an enquiry, I think there should be one, but I think we would have a lot more clout and make a lot more progress if we wait a little while until evidence is unquestionable and the people who have dictated the narrative for so long truly have their backs firmly up against the wall.

I also think a campaign led by charities and other organisations would be better than 1 single doctor in private practice. I think her book etc should be out of it all together.
There is enough materials to draw on to support our case without resorting to the book of the person who is leading the campaign. I just think it makes it very vulnerable to criticism and accusations.

We also know doctors lives can be made hell when they take a stand in the world of ME. She is very brave and courageous to do this, and I admire her strength and courage to do this and her intentions, but I think there is safety in numbers and also influence and power in numbers, a collective of organisations and researchers and clinicians acting together would be better than this approach I think. I also think the push has to come from mainstream medical research and practice rather than the fringes.

But maybe I am just being critical because I have an MP who is useless and would not give a shit, compassion and real genuine concern does not appear to be in my MPs nature unless it comes to business interests.
 

Hip

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They measured 16 different outcomes, 14 of which showed no significant difference and 2 of which showed a small significant improvement. Overemphasising the two exceptions is textbook p-hacking.
I've responded to your point HERE on the Valcyte thread that you mentioned, in order to keep this thread on track.
 

Laelia

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What utter nonsense
What proof do you have @wdb that this is utter nonsense?

(@wdb was referring to the following statement by Dr Myhill: By contrast practitioners working outside conventional "NICE Guidelines have established many effective treatments which are safe and efficacious and which get people back to work and off benefits")

Note that Dr Myhill is not saying here that these treatments are effective in getting everyone back to work. I honestly don't know if these treatments are effective in getting anyone back to work. However, personal experience, claims made by other practitioners, and a huge amount of anecdotal evidence leads me to wonder if these treatments might well be very effective for some patients, perhaps many.
 
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