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Treatment of ME patients in ERs and Hospitals

Discussion in 'General Advocacy Discussions' started by JenB, Jul 27, 2018.

  1. JenB

    JenB Senior Member (Voting Rights)


    Hi all! I'm working to improve the quality of information for patients with ME, fibro, EDS, POTS, mast cell activation disorder having surgery as well as crowdsourcing a set of best practices for hospitals.

    The former will eventually be packaged into handouts patients can give their surgeon and anesthesiologist. (There are many great existing resources but nothing comprehensive.)

    The latter will eventually be improved in consultation with physicians, and will serve as a resource for patients around the country/world seeking to engage with their local hospitals re: how to improve care for ME patients.

    Please jump in (simply create an account and hit "edit"). Too timid to edit the page directly? You can also make suggestions or link to resources in the "discussion" tab.

    I'd like to pull from all of the existing medical resources addressing this topic but also from your personal experiences in hospitals and emergency rooms. What policies or training, had they been in place, would have improved the quality of your care?


    Last edited: Jul 27, 2018
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  2. Alvin

    Alvin Senior Member (Voting Rights)

    I'll give it a whirl though i'm not quite sure what i can add (though i had an immediate crash from holding myself perfectly still after my second MRI)

    BTW your second link goes to facebook
    Last edited: Jul 27, 2018
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)


    I am worried by this. It seems to be a muddle of pseudoscience to be honest. No good quality physician would want to get involved with it. I have yet to see any useful evidence that people with ME have 'mast cell activation disorder' or 'Ehlers Danlos syndrome' and I have a lot of reasons from personal experience with physician colleagues to think these are spurious. I very much doubt that more people with ME than others have cervical spine problems. So the main effects of a list like this would seem to me to be to frighten people with ME unnecessarily and to get the anaesthtist's back up.

    If advocacy is going to help medical care it needs to be based on proper evidence. That is what we are trying to drum in to the NICE people about their guidelines. They need to stick to the evidence. Until everyone sticks to the reliable evidence we remain in a sort of treacle of pseudo facts.

    Are you really sure your organisation wants to be putting up medical advice on the internet when the people involved don't actually know much about medicine?
  4. Denise

    Denise Senior Member (Voting Rights)

    @JenB - The attached may have some ideas for you. While this is not about policies per se, it is about what homebound/bedbound patients might find useful in terms of medical access.

    Attached Files:

  5. JenB

    JenB Senior Member (Voting Rights)

    I figured you would be!

    • I don't think you need research to show that people with ME may have co-morbidities of POTS, MCAD or EDS. This is a clinical question: people will either have these diagnoses on their chart, or they won't.

    • Based on all of my experience in this patient community and based on the collective clinical experience of doctors in the US, we don't think these relationships are spurious. I expect and hope there will be publications in the coming year or two. At the ME/CFS clinicians' summit earlier this year, there was a lot of discussion about mast cells and EDS, based on what people are seeing clinically and in families.

    • There have been numerous cases of people with ME with undiagnosed cervical issues or spinal fluid leaks. Is it more than the general population? Probably. Does that necessarily related to a common disease process? No, not necessarily. There's a great deal of symptom overlap between these issues and every ME/CFS diagnostic criteria and no biomarker for ME. Whether this is a part of the disease or are misdiagnoses, it's reasonable to assume that we will observe cases like this in this our community, and will continue to until diagnosis becomes more clear.
      Here is one study: https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1397-7 The rest is all lectures and talks by Peter Rowe, Ian Carroll, etc and clinical experience from a dozen doctors.

    • The cervical issues are also known issues in EDS and dysautonomia. Many people with ME will have POTS or other forms of dysautonomia. Orthostatic intolerance is a symptom of both Chiari malformation and craniocervical instability. So if you have ME + EDS, or ME + POTS, you may well have or be at risk of developing one of these issues. The challenge is that these are almost never ruled out. Many people with ME never even get and MRI and the only way to conclusively diagnoses these two issues is via an upright MRI, and those machines are rare.

    • I'd much rather be cautious than sorry. At the end of the day, my care is only possible through the consent of my doctors. I can't force an anesthesiologist to agree to have my head in neutral position. But if he is comfortable doing that in my specific case, for my specific surgery, all the better.

    • Yes I think it is very important to crowdsource this information, especially practical tips re: care and procedures in hospital. I had to wait eight additional hours before I was able to leave the hospital in a reclining wheelchair because no nurse felt empowered to order one for me. If I had simply known to talk to a doctor in advance, and had a note written in my chart "patient may need to be taken to car in wheelchair or gurney" it would have saved so much grief. I bet there are other experiences patients have had re: what would have made their hospital stay easier.

    • Most of the information on the wiki is coming from resources clinicians have previously published themselves. Not everything needs to be an RCT. So much of medicine comes from direct clinical experience. That may be a problem in itself (much of medicine isn't evidence-based, doctors can self-deceive, etc.) but it's very reasonable for doctors to talk to other doctors. Before we turn this into a handout that patients would actually give to their surgeon or anesthesiologist, we'd work with a group of clinicians to fact check, edit and their give stamp approval.
    I handed my anesthesiologist Dr. Lapp's guidance and he was very happy to follow it as he had alternatives he was comfortable using that avoided the classes of drugs that people have found, through experience, are problematic. Was it unnecessary? I have no idea because I can't observe the alternative, but from an anesthetic perspective, the surgery was great and I didn't have any allergic reactions or autonomic symptoms, and my anesthesiologist didn't have any problem taking a conservative approach. The US is, of course, for better or worse is just very different.

    A national guidelines is very different from a handout to start a conversation with your doctor. We would never ask the CDC to put this on their website. Everything in our NICE guidelines reply was cited, usually drawing on multiple studies, or citing the NHS itself.

    For my part, my doctor suspects craniocervical instability. I've had a drastic worsening of symptoms since surgery and it's gotten to a point where if I don't have my head in a set of very precise positions, I stop breathing, or fall over (if walking) or have numbness or flaccidness. It would have been nice, if it was possible (and it might not have been) to have known enough to ask my surgeon and anesthesiologist to take a conservative (head neutral) approach. It may not have been possible for thyroid surgery, but I wish I had had that conversation.


    Re: cervical risks, there may be a further way to attenuate/qualify the language. Will take a stab at it.
    Last edited: Jul 27, 2018
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  6. Samuel

    Samuel Senior Member (Voting Rights)

    Last edited: Jul 27, 2018
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  7. Skycloud

    Skycloud Senior Member (Voting Rights)

    Hi Jen. I'm sorry but I'm a bit bewildered by this. It seems to me that each of these conditions have clinicians, organisations and patient forums etc that should be best placed to give good advice and information to pwME that have these comorbidities to share with their doctors/ anaesthetists etc when needing care or procedures in hospitals.

    I don't understand why MEAction would be trying to cover these conditions too and perhaps not doing such a good job of it. Wouldn't it be better to provide links to information sources for each condition?

    Perhaps I've not understood you properly.
  8. JenB

    JenB Senior Member (Voting Rights)

    MEpedia is an open wiki. This is an invitation for anyone to contribute whatever content they like. That said, I imagine much of this page is / will be be a collection of links to existing resources. (e.g., there's no need to reproduce Dr. Lapp's full set of recommendations re: anesthesia when we can just link to his website). If you want to contribute, and have any specific questions/ideas, do post them on the discussion page. The first step is just to crowdsource everything that's out there.

    On your point, you're right: I don't expect ME/CFS clinicians to be able to give advice on these comorbidities, except inasmuch as they relate to ME. I think Jonathan's question was more, why mention them at all when there's no scientific evidence that people with ME have these comorbidities at a higher rate? If you look at the page itself, I don't think it's trying to "cover" these conditions as it is mentioning that people with ME may have them. 90% of the medical content on the page so far is from Dr. Lapp's advice.

    The editing and distillation of this into a more official, printable source is something different entirely as it will need to synthesize the existing resources and update them in consultation with clinicians. But that's a completely different process and bridge to cross when we get there.
  9. duncan

    duncan Senior Member (Voting Rights)

    Clinicians. :)

    None of them knows noth'n. They help legitimize us, yes, and that is huge and amounts to a debt we can likely never repay. But, they don't know much. Even the ones that do often parrot shit like PACE or variations of it.

    Personally, I'd pick some patients over even the best so-called experts, at least in terms of practical imperatives.
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  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    The basic problem, Jen, (@JenB) is that physicians talk a lot of rot. Having a diagnosis on your chart may mean nothing. I started out my career doing the hypermobility clinic for the 'top EDS specialist' in the UK. I rapidly came to realise that all the theories were just self-fulfilling speculations - like Freudian psychology.

    I will be up front about this. People with ME have had a raw deal as much as anything, as Duncan suggests, because the field has been full of second rate physicians. The stuff presented at conferences just is not up to a basic standard. And much of the problem is that instead of focusing on the real illness, ME, physicians go off into weird and wonderful pseudo physiology because they think it sounds clever. The more they do that the more people like Simon Wessely are entitled to say that patients are just picking up unhelpful beliefs.

    Medicine has changed dramatically in the 40 years I have been in it. When I read for my senior physicians' exam in 1976 I used an American textbook called Harrison, and learned every fact there was to learn in medicine (it was possible in those days). I used an American text because it was exhaustively referenced with actual evidence, unlike UK texts which had few if any citations. That tradition came to a peak in the 1990s when those of us who provide chapters for textbooks had to have a rigorous evidence base either side of the Atlantic.

    Everything has now changed. The journals have become commercial enterprises happy to publish any rubbish that authors will pay $2000 to get on their CV. Medical meetings have been taken over by commercial interests and are mostly about selling stuff, no matter what the quality. Because we believe in free speech 'special interest groups' are allowed to talk drivel to each other with nobody bothering to point out that it has no basis.

    At a recent dinner organised to bring together the good and the great of ME research in London I looked around and realised just thin things were. There were maybe three scientists there I would rate as knowing what they were doing - all outside the field of ME itself.

    So the fact that there are 'ME experts' who say this or that at conferences means nothing to me. I want to see the factual basis of what they claim published in a way that can be assessed in the way any other medical science is assessed.

    If these so-called associations with 'EDS' or 'MCAS' were real they would have been published by people like me in the 1970s. I won't hold my breath for publications in the next year or two.

    And don't you think it might be irresponsible to set up a webpage where anyone can put in their suggestions and that purports to give people medical advice? There are good reasons for not taking things by mouth before anaesthesia - like dying from aspiration pneumonia. Being cautious rather than sorry is to me not putting up medical advice unless it is well established.

    Surely what we want is a science of ME, not a pseudo-science of all the syndromes supposed to link to ME.
    The more patients focus on these supposed associations the more they will be ignored and ridiculed by physicians behind their backs. I have seen that for fifteen years first hand in my old department.
  11. Alvin

    Alvin Senior Member (Voting Rights)

    I know your talking to Jen but i'm going to toss in a few thoughts

    I don't disagree with most of this

    I agree to a point, there are more then a few theories presented that are unsupported or supported with cherry picked evidence which i don't like to see. That said when your at the beginning of understanding something this needs to be somewhat tolerated till we get further along so we should not cut off our noses to spite our faces. If some of those presenters were at a Parkinsons conference they would be laughed out of the room because much more research and discovery has taken place that we can weed out the obvious wrong ideas but in ME we have very little so far. That all being said i would also like to not see nonsense theories and move towards a unified and very supported theory of disease mechanism which i hope will happen soon.

    The 70s were not a golden time in medicine, they were a decade of research just like those before and since. I would totally support more research into comorbid or associations, with lots more money and lots more researchers it could be done. Perhaps Jen has some connections and is giving us a nugget about a year or two

    This is about the same argument traditional encyclopedias had against wikipedia. Wikipedia is by no means perfect (the ME/CFS page bears witness to that) but it went from an idea to the worlds largest encyclopedia, bankrupting more then a few competitors. It has also evolved as problems came up and solutions needed inventing to deal with the challenges inherent to an open system. There are still problems to be fixed but it has become an excellent repository of human knowledge, far exceeding what came before it and it started with an idea that was very flawed but the risk was taken and issues innovatively handled.
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  12. Guest 102

    Guest 102 Guest

    Couldn’t agree more. I find it dislocating and unhelpful to see ME - the illness I know as ME, at least - being ‘packaged’ with every other poorly understood syndrome under the sun, with little evidence.
  13. Barry

    Barry Senior Member (Voting Rights)

    @Jonathan Edwards, I have to agree with this. So much of what PwME are up against, is medical treatments and practices alleging good scientific underpinning, but not at all. It's not about what we are merely convinced is right, but what also has good scientific evidence supporting that conviction. PACE epitomises that failing of course, but far from alone. As Science for ME we just have to stick by what we stand for.

    Edit: Added sentence "It's not about ...".
    Last edited: Jul 28, 2018
  14. JohnTheJack

    JohnTheJack Moderator Staff Member

    I'm with @Jonathan Edwards on this.

    I also think it's unhelpful to lump ME together with other illnesses. It reeks too much of MUS to me. I don't have comorbidities. I have sympathy for those patients who do and hope they get the help they need for them. I also have sympathy for patients who have illnesses and encounter similar problems of being doubted as we do. But that doesn't mean there is anything that necessarily links the illnesses.

    I think this just muddies the issue. ME is a discrete illness and I want good, solid, proper research on ME.
  15. Guest 102

    Guest 102 Guest

    What you are going through sounds extremely frightening, Jennifer, but with respect it strikes me that you are extrapolating your own very unique experience and generalising it to be meaningful to the whole ME population. I agree with @Jonathan Edwards it could be somewhat alarming for pwME facing anaesthesia, which is scary enough on its own terms. I hope your issues resolve.
  16. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    If I had ME and did not know anything about the medical background I would find this booklet pretty frightening because of all the things it says might go wrong. And as far as I know none of the advice is based on any documented evidence. Most of it draws on anecdotal accounts.
  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    I would urge people with ME to see it differently. Jen quoted a paper on spinal stenosis and a couple of videos. These things seem to show something interesting but they are not presented in the way they should be even as initial observations in scientific enquiry. Implications are being drawn from anecdotes. This is typical pseudo-scientific medicine and it gets us nowhere. Study of associations needs proper epidemiology. I would urge PWME to confront their physicians and ask them why they are not doing the science properly. As long as physicians can get away with giving lectures based on anecdotes, ME research will remain a backwater. Raising millions of dollars for studies that tell us nothing useful is no better than PACE to my mind.
  19. Alvin

    Alvin Senior Member (Voting Rights)

    I have not watched the videos or read the paper, so i have no opinion to give on that facet.
    What i am saying is we need to analyze very critically yet have an open mind.
    Many patients report OI or POTS for example, i don't know of research that confirms the association with ME/CFS but its not a stretch to think it makes sense and if unstudied it would also be reasonable to do a controlled study to confirm or disprove the relationship.
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  20. Dr Carrot

    Dr Carrot Senior Member (Voting Rights)


    I think all that’s listed is other syndromes. The majority of people with an ME diagnosis in my support group will also have one of the following: POTS, EDS, or some level of mast cell/histamine issues. Unscientific, obviously, but I wouldn’t be surprised if this was the case for the patient population at scale too.

    There are little bits and bobs of these other syndromes that are able to be alleviated or treated, creating a better QOL for those ME patients. To ignore this seems short-sighted, and to be honest gets into the territory of “my illness is more valid than your illness”, which is ridiculous.

    ME needs to be investigated and researched thoughly, but if a patient also meets diagnoses for other things (as, in my experience, they often do) there’s no reason why that sort of crowdsourced patient advice shouldn’t be added to a website, as long as it has the caveat of something like “some patients have found...” or “many patients report that...”.
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