Dolphin
Senior Member (Voting Rights)
Hospital Care Plan for Severe-Very Severe ME/CFS and long COVID (and associated conditions, e.g.: dysautonomia)
Hospital Care Plan for Severe-Very Severe ME/CFS and long COVID (and associated conditions, e.g.: dysautonomia) (ME Respite & ANZMES)
Utsikt
Senior Member (Voting Rights)
Briefly skimming it, I noticed a lot of unfounded statements about pathology and comorbidities. There’s talk of how ME/CFS might present with 100-200 symptoms and is highly individual.
It also seems like it might be too long and some of the headings are misleading. The section about low-stimuli environment and limiting interactions etc. is named «Creating an Environment for Validation and Empathy».
There are useful bits that can be reused in a revised version.
It also seems like it might be too long and some of the headings are misleading. The section about low-stimuli environment and limiting interactions etc. is named «Creating an Environment for Validation and Empathy».
There are useful bits that can be reused in a revised version.
Jonathan Edwards
Senior Member (Voting Rights)
I am unclear on a brief skimming who this is intended for. It seems to try to put too much in to one document - with different material potentially being aimed at different people. There is a lot of unnecessary material about speculated pathologies and problems. As it is I think it will put health professionals off quite quickly and they will ignore it. That would be a pity because there are a lot of elements that are relevant to simple practical matters.
Unfortunately, this is standard from ANZMES. Fiona Charlton who leads ANZMES was one of the authors of a recent paper that wrecked what could have been good basic information about what we know about number of people affected in New Zealand and services available by adding in a whole lot of unfounded conjecture. She has been told by a number of people that she is not helping ME/CFS advocacy by being so certain about things, but she seems very confident in her knowledge.
ME Respite is a nice charity trying to do good things, trying to make places for people with severe ME/CFS to get care.
hotblack
Senior Member (Voting Rights)
Is there any way they may be open to a refined edited down version?
bicentennial
Senior Member (Voting Rights)
Either way, lets do it.
There are several motley publications worth sieving though and filtering.
Ravn
Senior Member (Voting Rights)
Not to discourage anyone from trying but that won’t be easy
These last months I’ve spent a huge chunk of my screen-time budget on trying to convince our advocates that they’d be more effective if they restricted their messaging to the most important and best evidenced points, to little avail. It appears my own messaging is not overly convincing either
A big stumbling block is that they genuinely believe all their claims are solidly evidence-based. I don’t know how to convince them otherwise. It doesn’t help that at least some of them are downright allergic to S4ME
I’m beginning to think we need to put more urgency into expanding and promoting our fact sheet project. It might not help in this specific case but there are bound to be other organisations who would adopt our fact sheets even if only because they’re too resource constrained themselves to create or update their own
Says she who doesn’t have the capacity to lead a project herself...
We have the Fact Sheet Project thread (members only) should anyone have any bright ideas for how to expand our collective capacity
hotblack
Senior Member (Voting Rights)
Thanks @Ravn
Yes thst seems to be the problem we face in multiple places doesn’t it. People genuinely believe they are helping, basing things in evidence and doing good. I’m sure we’re all guilty of the same at times! Persuasion is tough, especially to people already facing so many disbelief and challenges.
Yes, relying upon ill individuals and trying to reach consensus is obviously very energy and time consuming so a limiting factor. I wonder if there’s some way we could find a good professional science writer or communicator to employ to do some of the work and take the load off?
Thank you for doing that. It's such a shame that they aren't listening and taking advantage of your expertise and skills. I wish there was a way to convince them. It's hard to believe that they can't see what we see.
I think we may just have to step around the people who won't listen. You and I and others who care about good quality evidence are advocates too, and are in roles where we can effect some change.
Jonathan Edwards
Senior Member (Voting Rights)
It is such a pity that people writing stuff like this do not realise to what extent they are shooting themselves, and in the process everyone else with ME/CFS, in the foot.
Nightsong
Senior Member (Voting Rights)
I have just had a look at the very first page of this:
I haven't read through the entire document; all of the above was from Page 1. I am sure the authors are very well-intentioned but if it continues in the same vein it really does need a complete rewrite.
Outside of a narrow stratum of private "POTS specialists" the term "dysautonomia" is considered to refer to conditions such as pure autonomic failure and multiple system atrophy/Shy-Drager syndrome. And regardless of any debates about the conceptual validity of POTS there is no hard evidence of association with definitive autonomic disorder in the classical sense.
It needs supportive medical and nursing care and accommodations. "A multidisciplinary approach" will inevitably be interpreted to include psychology, physiotherapy etc. And the term "complex" is best avoided - in some contexts it can have a subtle dual meaning that many patients perhaps don't appreciate.
The only evidence that I regard as sufficiently serious to cite in guidance comes from the two main prospective studies (Dubbo & Jason) - they have their own limitations but I think it would be reasonable for the authors of guidance documents to draw a link to glandular fever based on those. Mentioning post-COVID cases would also be reasonable. Everything else exists somewhere between speculation and evidence of such low quality that it should not feature in documents put out by national charities.
Does it, though? The most reliable evidence here comes from the DecodeME preprint.
I think some patients think that "100-200+ symptoms" must inherently be more believable than a small cluster of core symptoms likely to have a single unifying cause. That is.. not the case. This is likely to come across to the average medic in much the same way as the patient who produces a list of their 50 allergies.
I have to ask: would this sentence be added to a document about another often invisible illness - MS, say, or SLE? Because we really need to move to a point where ME/CFS is simply discussed as a disease like any other.
I haven't read through the entire document; all of the above was from Page 1. I am sure the authors are very well-intentioned but if it continues in the same vein it really does need a complete rewrite.
The only thing I disagree with a bit in that very good detailed analysis of the issues in the first page of the document by Nightsong is this:
I think there is decent evidence to suggest that infections beyond EBV, Ross River Fever and Q fever seem to trigger ME/CFS too. As you say Nightsong, COVID-19 also seems to cause ME/CFS, as did SARS CoV-1 and MERS. Perhaps there is not sufficient evidence to say for certain that, for example, Ebola causes ME/CFS, but it seems likely that it does.
I think it is possible to make a case that exposure to toxins might cause ME/CFS-like illnesses too - with Gulf War Illness and persistent ciguatera possible examples of that.
So, if the document had said something like 'ME/CFS seems to be triggered by some infections such as glandular fever and Covid-19. There may be other causes', I think that would have been fine. Even if they had said 'ME/CFS seems to be triggered by infections such as glandular fever and Covid-19 but there may be other causes such as exposure to toxins', I think that would have been defendable.
I agree that all of the other things in that list range from poorly evidenced possibilities through to unfounded speculation. It's particularly unhelpful to serve people with ME/CFS up on a platter to those who believe that trauma and abuse is a cause of the illness.
The Dubbo study found a very similar impact in terms of post-infectious symptoms from EBV, Ross River Fever and Q fever infections. There is quite a bit of evidence that Q fever fatigue syndrome is the same thing. as ME/CFS. Because Q fever is caused by a bacteria, I think it is valid to say that ME/CFS can be caused by some viral infections and some bacterial infections.
I think there is decent evidence to suggest that infections beyond EBV, Ross River Fever and Q fever seem to trigger ME/CFS too. As you say Nightsong, COVID-19 also seems to cause ME/CFS, as did SARS CoV-1 and MERS. Perhaps there is not sufficient evidence to say for certain that, for example, Ebola causes ME/CFS, but it seems likely that it does.
I think it is possible to make a case that exposure to toxins might cause ME/CFS-like illnesses too - with Gulf War Illness and persistent ciguatera possible examples of that.
So, if the document had said something like 'ME/CFS seems to be triggered by some infections such as glandular fever and Covid-19. There may be other causes', I think that would have been fine. Even if they had said 'ME/CFS seems to be triggered by infections such as glandular fever and Covid-19 but there may be other causes such as exposure to toxins', I think that would have been defendable.
I agree that all of the other things in that list range from poorly evidenced possibilities through to unfounded speculation. It's particularly unhelpful to serve people with ME/CFS up on a platter to those who believe that trauma and abuse is a cause of the illness.
The document links through to a document by the Bateman Horne Center and seems to draw on that document for some of its content. This is a huge problem for advocates trying to argue for evidenced based documents with patient charities. People assume that such a highly respected clinic as the Bateman Horne Center must know what they are doing. They assume that anyone criticising such an institution and the information they put out is not adequately informed.
Medical considerations when treating urgently ill patients with underlying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
Bateman Horne Center - Research - Clinical Care - Education
excerpts
It's really concerning to see the recommendation in the BHC document to 'start low (10-25% of usual) with medication doses'. I think that is so ridiculous that no sensible doctor would take any notice of it. But, it does mean that anyone trying to get a doctor to take notice of a document with that in it is likely to be quickly dismissed.
Medical considerations when treating urgently ill patients with underlying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
Bateman Horne Center - Research - Clinical Care - Education
excerpts
It's really concerning to see the recommendation in the BHC document to 'start low (10-25% of usual) with medication doses'. I think that is so ridiculous that no sensible doctor would take any notice of it. But, it does mean that anyone trying to get a doctor to take notice of a document with that in it is likely to be quickly dismissed.
The more I think about that poor quality Bateman Horne Center document, the more concerned I am. We need that clinic to be a shining star of rationality about ME/CFS, but it seems to be a long way away from that.
We've seen them carry out poor quality trials, presumably contracted by the people who stand to make money from ineffective treatments that are made to look better than they are. And, we've tried to make excuses for them. They are so clearly also well meaning. But, the poor quality medical statements keep coming, and at some point I guess we have to admit to ourselves that that clinic is not helping. In fact, it is probably contributing to the impression many medical professionals have that ME/CFS is a fake disease for hypochondriacs.
We don't seem to have a thread for that Bateman Horne 'Medical considerations when treating urgently ill patients' document yet.
We've seen them carry out poor quality trials, presumably contracted by the people who stand to make money from ineffective treatments that are made to look better than they are. And, we've tried to make excuses for them. They are so clearly also well meaning. But, the poor quality medical statements keep coming, and at some point I guess we have to admit to ourselves that that clinic is not helping. In fact, it is probably contributing to the impression many medical professionals have that ME/CFS is a fake disease for hypochondriacs.
We don't seem to have a thread for that Bateman Horne 'Medical considerations when treating urgently ill patients' document yet.
bicentennial
Senior Member (Voting Rights)
The Bateman Horne Clinic also produced a Care Guide, soon to be presented by Forward-ME. So I began to discuss its clinical and scientific quality there, linking further to show this clinic and its material already endorsed by the pilot of the World ME Alliance's Education Hub.
The clinic does good things but its a mixed bag.
Edit - replaced "provenancing" with "clinical and scientific quality"
The clinic does good things but its a mixed bag.
Edit - replaced "provenancing" with "clinical and scientific quality"
Last edited:
Nightsong
Senior Member (Voting Rights)
Yes, and many post-acute Lyme disease cases seem to be ME/CFS, too. But hard evidence that goes to causation such as from prospective studies is surprisingly thin on the ground. Also not sure that I'd assume that a lot of post-Ebola syndrome is ME/CFS - given its severity recovery from Ebola may be particularly prolonged & if I recall correctly there is also some evidence of persistence in the post acute phase for a period of months, & of features unrelated to ME/CFS such as uveitis occurring afterwards as well. Perhaps sometime we could look at what evidence is out there.