Jonathan Edwards
Senior Member (Voting Rights)
Fair enough but the MEpedia page is something very different. It gives medical advice on 'best practice' without indication of the quality of the evidence base.
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Treatment of ME patients in ERs and Hospitals
Fair enough but the MEpedia page is something very different. It gives medical advice on 'best practice' without indication of the quality of the evidence base.
Alvin
Senior Member (Voting Rights)
Wikipedia does the same thing, and in the case of ME/CFS its advice is supremely terrible. Perhaps due to the efforts of one or more people on S4ME it has improved slightly recently. People from the same place who are being asked to help MEpedia...
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Dr Carrot
Senior Member (Voting Rights)
Agree, I think that there shouldn’t be any ambiguity about this sort of stuff
Hi @JenB. First, I want to send you good wishes and hope for a good resolution of your latest health problems. From the bits I've picked up on Twitter and here I understand you've been through a horrible time. I'm so sorry that you are suffering so much.
I admire your wish to turn your experiences into something good that can help the rest of the ME community, and appreciate all the effort you have and continue to put in on behalf of others.
I see MEPedia as a valuable resource in providing summaries and links for all aspects of ME, including links to research papers and resources useful for pwME.
But it can't do everything. It can't, for example, provide information on medical and scientific aspects of ME that aren't yet available. Simply pulling together everything we can find on, for example, anaesthetics for ME, in the form of links to the document you shared with your doctors and the ME Association leaflets on Anaesthetics may be realistically all we can do on that subject at present.
If there is no definitive research on this topic, other than what appears already in those documents, I don't understand the point of patients trying to produce our own separate document. Even if we get clinicians to look it over, it would still be a lay summary of documents already produced by doctors, and one in which we don't have the experience to know which bits of information we quote are accurate.
By all means produce a page on MEpedia that links to resources. Then those about to have operations can find the document you used or the MEA documents more easily. But lets not pretend we can produce something better.
On the other hand, I can see the point of patients like yourself writing down in shareable form descriptions of your own experiences, good and bad, of being in hospital.
I have just read Jessica Taylor Bearman's book 'A Girl Behind Dark Glasses', which gives in searing detail her experiences of 5 years in 3 different hospitals while suffering from very severe ME. Her experiences ranged from good, through ignorant but trying to help, to truly horrendous. That book should, I think, be required reading for all doctors and therapists treating people with severe ME.
A description of your experiences in hospital from your perspective as a patient, with suggestions for hospital staff on better ways of dealing with people with ME could provide a similar valuable resource.
I admire your wish to turn your experiences into something good that can help the rest of the ME community, and appreciate all the effort you have and continue to put in on behalf of others.
I see MEPedia as a valuable resource in providing summaries and links for all aspects of ME, including links to research papers and resources useful for pwME.
But it can't do everything. It can't, for example, provide information on medical and scientific aspects of ME that aren't yet available. Simply pulling together everything we can find on, for example, anaesthetics for ME, in the form of links to the document you shared with your doctors and the ME Association leaflets on Anaesthetics may be realistically all we can do on that subject at present.
If there is no definitive research on this topic, other than what appears already in those documents, I don't understand the point of patients trying to produce our own separate document. Even if we get clinicians to look it over, it would still be a lay summary of documents already produced by doctors, and one in which we don't have the experience to know which bits of information we quote are accurate.
By all means produce a page on MEpedia that links to resources. Then those about to have operations can find the document you used or the MEA documents more easily. But lets not pretend we can produce something better.
On the other hand, I can see the point of patients like yourself writing down in shareable form descriptions of your own experiences, good and bad, of being in hospital.
I have just read Jessica Taylor Bearman's book 'A Girl Behind Dark Glasses', which gives in searing detail her experiences of 5 years in 3 different hospitals while suffering from very severe ME. Her experiences ranged from good, through ignorant but trying to help, to truly horrendous. That book should, I think, be required reading for all doctors and therapists treating people with severe ME.
A description of your experiences in hospital from your perspective as a patient, with suggestions for hospital staff on better ways of dealing with people with ME could provide a similar valuable resource.
G
Guest 102
Guest
Indeed. And do we know for sure that pwME ‘may have undiagnosed or subclinical structural cervical issues such as craniocervical instability or cervical spinal stenosis.’?
Of course anaesthetists should be made aware of potential issues w ME but since we are still trying to educate doctors here in UK in the very basics of ME, I imagine trying to tell your anaesthetist that you also might have subclinical structural cervical issues would get you catapulted to Wessely territory. That is not to say we should not be educating the hell out of doctors, we should, but we need high quality information - especially since there has been so much poor quality for so long.
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This article by Rowe discusses 3 of his patients with ME and cervical spinal stenosis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5796598/ But who knows how widespread the issue is.
I will also note that I know a few PwME with cervical spinal instability that from the looks of it (MRIs and xrays) would not produce problems but in fact result in hours long tremors among other symptoms. One patients symptoms became so severe they were nearly unable to swallow water (let alone food) and unable to speak above a whisper and only when absolutely necessary. For that patient, cervical fusion has helped each of those issues. (The others are holding off until symptoms cannot be tolerated any longer.)
G
Guest 102
Guest
Yes, but this is still anecdotal and if you were having surgery in UK trying to educate your anaesthetist on very real possibility of exacerbation of symptoms post-anaesthesia I am not sure producing a handout with anecdotes of cervical spinal stability is way to go.
mango
Senior Member (Voting Rights)
I'm currently being denied dental treatment/surgery because I insisted that they consider ME, POTS/OI and the risks involved (I'm severely ill), and avoid using anaesthesia containing adrenaline if possible. I used Dr Lapp's document as the main reference together with Brook's article on POTS and dental treatment considerations.
They completely refuse to acknowledge ME and POTS/OI, and I'm now being discriminated against and being treated very horribly (consent and privacy violations etc) because of my so called [irrational] "fears".
They completely refuse to acknowledge ME and POTS/OI, and I'm now being discriminated against and being treated very horribly (consent and privacy violations etc) because of my so called [irrational] "fears".
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G
Guest 102
Guest
So sorry to hear this - are you in Sweden, Mango? I am in UK and always now get adrenaline-free local anaesthetics, even had that for a wisdom tooth extraction at dental hospital round six years ago. I just gave them the basic dental literature I had - I think from MEA. My understanding is with adrenaline-free it lasts for less time and they may need to give you more.
(Just to add, if I were ever having a general anaesthetic I would certainly be nervous re implications for ME, but I would want to give the anaesthetist the most simple, factual literature I could beforehand. I don't have full-blown POTS, but def have orthostatic intolerance.)
Jonathan Edwards
Senior Member (Voting Rights)
I realise that this is a very real problem. PWME clearly have very real intolerance problems with drugs. The fears are not irrational. On the other hand the explanations for the intolerance problems often given by ME physicians look to me to be implausible and pretty simple-minded. I think it would be better if information sheets simply said that PWME have serious intolerance problems with drugs but we have no idea why and so every effort should be made to minimise the exposure to just about anything that is not completely necessary.
There is a lack of scientific literature in regards to anesthesia and patients with ME. Many of us have a problem with epinephrine in the local freezing and i do not believe this has been researched at all.
It would be interesting to survey patients in regards to peri-operative complications, for the researcher to review medical records and to make a hypothesis as of what is happening (and test this hypothesis throuh science). In fact I believe that patients should request this topic to be formally studied, as this is likely to have important implications for the patients undergoing surgery. Perhaps Dr Jason and his team would be interested in surveying patients, researching (and publishing) this?
This would already been done if it was a disease that belonged to a medical specialty.
As much as patients can be powerful in affecting change, some things such as hopital and peri-operative protocols need to be established through scientific evidence and publication.
It would be interesting to survey patients in regards to peri-operative complications, for the researcher to review medical records and to make a hypothesis as of what is happening (and test this hypothesis throuh science). In fact I believe that patients should request this topic to be formally studied, as this is likely to have important implications for the patients undergoing surgery. Perhaps Dr Jason and his team would be interested in surveying patients, researching (and publishing) this?
This would already been done if it was a disease that belonged to a medical specialty.
As much as patients can be powerful in affecting change, some things such as hopital and peri-operative protocols need to be established through scientific evidence and publication.
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mango
Senior Member (Voting Rights)
Thank you so much for your kind words. Yes, I'm in Sweden. I completely agree with you re: the most simple, factual literature. I ordered the info sheet about dental care and anaesthetics from MEA, but unfortunately I didn't find it helpful at all in this context.
I'm trying to change to another clinic, and I will definitely file a complaint...
Inara
Senior Member (Voting Rights)
@JenB, I think your idea is a good one.
I have my personal "in case of a hospital stay sheet" - and it is not evidence based!
It is based on (partly my) experiences. Which I think, for survival, are important and should be integrated into one's life.
Reality is reality, not science is reality. Ideally, science is the approaching process to reality. It will never be exactly reality. It is known that most of science today doesn't do it.
We also know that it takes 15-20 years until medical scientific findings sip through to doctors, if at all.
The reality - at least in some countries - are situations like @mango's at the dentist. Doctors shouldn't behave like that, but they mostly do. Science is not there to help - so what to do?
I had some surprises in the past with low oxygen and different drugs. Personally I didn't like these surprises so I decided to take precautions. Everybody is free to do that or not to do that. Since there are nearly no scientifical publications about which substances or situations could be problematic with ME (and since we don't know yet what the pathological process behind ME is), one is left with information from experiences. For me, this is good enough.
Very often it's not about death or life if I want an alternative drug. It's about people who have to change their routine and don't want to, it's about dominance and power ("I, the doctor, say!") and it's about money (e.g. adrenaline-free anaesthetics are more expensive and most doctors don't have them in stock and have to order them).
I don't think that MCAS and/or EDS aren't real. Reality is that, at least with MCAS - or whatever process is behind it - people get better with certain drugs (e.g. antihistamines). This is reality - there are the observations - no matter if one believes in MCAS/EDS etc or not.
There are a bunch of intelligent people behind research in MCAS or EDS. There are also not so bright ones - that's normal. More research is needed, no question, as in case of ME. What we also know from ME are different, partly contradictory hypotheses. For outstanders, ME often looks like pseudo-science, too. I never understood why MCAS/EDS/POTS etc is pseudo-science and ME is not. I think these are opinions.
I have my personal "in case of a hospital stay sheet" - and it is not evidence based!
It is based on (partly my) experiences. Which I think, for survival, are important and should be integrated into one's life.Reality is reality, not science is reality. Ideally, science is the approaching process to reality. It will never be exactly reality. It is known that most of science today doesn't do it.
We also know that it takes 15-20 years until medical scientific findings sip through to doctors, if at all.
The reality - at least in some countries - are situations like @mango's at the dentist. Doctors shouldn't behave like that, but they mostly do. Science is not there to help - so what to do?
I had some surprises in the past with low oxygen and different drugs. Personally I didn't like these surprises so I decided to take precautions. Everybody is free to do that or not to do that. Since there are nearly no scientifical publications about which substances or situations could be problematic with ME (and since we don't know yet what the pathological process behind ME is), one is left with information from experiences. For me, this is good enough.
Very often it's not about death or life if I want an alternative drug. It's about people who have to change their routine and don't want to, it's about dominance and power ("I, the doctor, say!") and it's about money (e.g. adrenaline-free anaesthetics are more expensive and most doctors don't have them in stock and have to order them).
I don't think that MCAS and/or EDS aren't real. Reality is that, at least with MCAS - or whatever process is behind it - people get better with certain drugs (e.g. antihistamines). This is reality - there are the observations - no matter if one believes in MCAS/EDS etc or not.
There are a bunch of intelligent people behind research in MCAS or EDS. There are also not so bright ones - that's normal. More research is needed, no question, as in case of ME. What we also know from ME are different, partly contradictory hypotheses. For outstanders, ME often looks like pseudo-science, too. I never understood why MCAS/EDS/POTS etc is pseudo-science and ME is not. I think these are opinions.
G
Guest 102
Guest
Ain’t that the truth!
So much crucial research that hasn’t been done would have already been done if ME belonged to a medical speciality.
I think this is all that page is really trying to do, gather resources into one place and provide people with an overview. In fact, that is pretty much what most pages on MEpedia are trying to do. It’s a layer of synthesis/summary over existing primary and secondary sources.
If #MEAction were eventually going to make its own handout, we’d use it as a starting point but do what we always do, make sure we are incorporating the right team of experts in the process.