Is it helpful for MEPedia and ME advocacy to be broadened to include possible co-morbid conditions?

[Mij]

I would think it’s up to groups of people with those illnesses to decide if they want it to be subsumed.

Many already have from what I've been observing on twitter. The term PEM has taken on a whole new meaning.

 

[NelliePledge]

Many already have from what I've been observing on twitter. The term PEM has taken on a whole new meaning.

Oh great that’s all we need

 

[Estherbot]

Is it helpful for MEPedia and ME advocacy to be broadened to include possible co-morbid conditions?

No, I have eczema (which involves mast cells) as a comorbidity. This seems unconnected to ME.

Is my male pattern baldness related to ME?

Other people have bad breath...a link with ME? Of course not.

 

[Mithriel]

ME was just ME not connected with any other illness before CFS was invented. The confusion is with chronic fatigue being used as the sole symptom of CFS.

Lyme disease has it's own symptoms of which fatigue is one. While it may be possible to have both I do not see how it could be a comorbidity. The same goes for fibromyalgia. It was never mentioned with ME until CFS specialists in the US began diagnosing their CFS patients with fibro if they had severe pain, ignoring the fact that serious pain and trigger points are part of ME.

It isn't in anyone's interests to conflate diseases. The most likely outcome is for research cohorts to be mixed so there is never a significant result of a diagnostic test or a treatment.

 

[WillowJ]

Pretty sure if people post here to trash other diagnoses (as happens regularly on a variety of threads), the others won't want to work with us even on neglected illness issues.

 

[Saz94]

Pretty sure if people post here to trash other diagnoses (as happens regularly on a variety of threads), the others won't want to work with us even on neglected illness issues.

Yep.

 

[JES]

Is it helpful for MEPedia and ME advocacy to be broadened to include possible co-morbid conditions?

No, I have eczema (which involves mast cells) as a comorbidity. This seems unconnected to ME.

Is my male pattern baldness related to ME?

Other people have bad breath...a link with ME? Of course not.

On the surface it would seem obvious that it would not help ME/CFS, but it could be a little short-sighted. Ultimately, it could be that one day one of those co-morbid conditions will provide researchers the missing key and breakthrough to solve ME/CFS. That breakthrough could, let's say, happen when a researcher engaged with the community, like Robert Phair, is reading MEPedia and then suddenly it strikes him that something in the co-morbid condition could be utilized in ME/CFS diagnosis or research. It could actually also work the other way around, some researcher working on say, EDS, could get drawn to the MEPedia article and then continue reading on ME/CFS and get their interest into ME/CFS sparked.

There has already been numerous examples of this overlap in past and current ME/CFS research. Robert Naviaux is using the same ideas to research autism and ME/CFS, the metabolic trap model of Robert Phair, if correct, is in no way limited to only ME/CFS, Fluge and Mella came from oncology, German researchers have studied autoantibodies against the autonomic nervous system, which is actually more directly related to POTS, but may help to explain ME/CFS as well, etc etc.

 

[Hutan]

Pretty sure if people post here to trash other diagnoses (as happens regularly on a variety of threads), the others won't want to work with us even on neglected illness issues.

Many forum members think that some diagnoses are not valid. For example, most of us don't think MUS is a useful diagnosis. We think it is a label slapped on people without much thought, or knowledge of the underlying biological processes. Our disagreement with the term 'MUS' doesn't mean that we think people with that diagnosis aren't sick or in need of medical care or worthy of respect.

As this is a science forum, I think it's fine for members to question the validity of other diagnostic labels too. I think it's fine to say, 'ME is really a label given to several different diseases'. Sure, a person who says 'XXX isn't a valid diagnostic label' may not be the best person to collaborate with the XXX Society on something. But, it's possible that their views and questions might result in an insight that stops researchers and patients heading down dead-end paths and instead suggests a more fruitful approach.

Just because one or several members say a diagnostic label isn't valid, it doesn't mean that other members have to believe that and won't be able to work constructively with people with that diagnosis. The forum is not a monolith.

 

[WillowJ]

Many forum members think that some diagnoses are not valid. For example, most of us don't think MUS is a useful diagnosis. We think it is a label slapped on people without much thought, or knowledge of the underlying biological processes. Our disagreement with the term 'MUS' doesn't mean that we think people with that diagnosis aren't sick or in need of medical care or worthy of respect.

I think it’s possible to be nuanced enough to criticize wastebasket usages and vexatious diagnoses without having to allow insults to diagnoses that other patients find useful.

Edit: You will of course understand I am not defending diagnoses patients don’t find useful, such as MUS, but other diagnoses that get trashed around here, which patients do find useful.

 

[Trish]

You will of course understand I am not defending diagnoses patients don’t find useful, such as MUS, but other diagnoses that get trashed around here, which patients do find useful.

Would you like to be more explicit. What diagnoses are being trashed here?

I have not seen any trashing of people's genuine suffering. What I do see, and quite rightly in my opinion on a science based forum, is questioning of the usefulness of some labels.

For example, telling everyone with a few hypermobile joints (which is very common) that they have EDS and lumping this with the potentially disablng but fairly rare condition of hereditary EDS, may be just as detrimental to EDS research as including anyone with chronic fatigue in with ME.

 

[WillowJ]

Would you like to be more explicit. What diagnoses are being trashed here?

I have not seen any trashing of people's genuine suffering. What I do see, and quite rightly in my opinion on a science based forum, is questioning of the usefulness of some labels.

Are you sure about that?

How would you feel if you went to an Ehlers Danlos (EDS) board and they were saying that ME was a vague, unaccountable diagnosis and while the people were likely ill with something, they didn’t have ME because there’s no such thing.

Certainly they can find more than a few published papers to support this position. The papers might even make some good points in some cases.

Or suppose the EDS patients were even saying saying it (ME) was a useless diagnosis and implying some people with that diagnosis (let’s pretend for a minute that you can get diagnosed only from our specialists that we’re confident know how to diagnose*) aren’t even sick because you can’t go around telling everyone with fatigue that they have ME.

How would you feel if you went to a depression board and the patients were talking about how important it was that they didn’t have just fatigue, and their diagnosis was a lot different from ME because of this and that reason.

For example, telling everyone with a few hypermobile joints (which is very common) that they have EDS and lumping this with the potentially disablng but fairly rare condition of hereditary EDS, may be just as detrimental to EDS research as including anyone with chronic fatigue in with ME.

Sorry, but that’s a straw man.

hEDS is studied separately, or at least stratified in studies, if it’s studied at all. Most EDS doctors won’t take any patients who aren’t vascular or classic, however.

And the researchers who study EDS are well aware of the issues that there are different types with different needs and presentations. Those who study the group formerly called hEDS are well aware that this group is likely many types of EDS and possibly additionally some conditions that aren’t EDS at all. This is the entire point of the new Hypermobility Spectrum Disorder classification.

Edit: and well aware that people can have some hypermobile joints without having other bothersome symptoms. You can’t possibly meet any criteria for EDS that’s in use by any actual EDS specialist without having other symptoms and being generally ill. /edit

* Because that’s how EDS works. If the doctor doesn’t know how to diagnose, you don’t get that diagnosis. They’ll tell you you’re fine when you’re not, or make something up, or make an error. But you don’t get that diagnosis uncarefully. (Not that it can never be a mistake, anything can, just that it’s not given out like candy like other diagnoses are sometimes.)[/QUOTE]

 

[WillowJ]

indeed, ME research could learn a lot from stratification strategies of EDS research.

 

[WillowJ]

Because that’s how EDS works. If the doctor doesn’t know how to diagnose, you don’t get that diagnosis. They’ll tell you you’re fine when you’re not, or make something up, or make an error. But you don’t get that diagnosis uncarefully.

Well, except rheumatologists who for some reason decide to use Beighton criteria alone. Not an actual specialist, mind you, or they’d know that Beighton is just a criterion that helps make up Brighton,

But I sort of doubt that if someone meets Beighton, they wouldn’t have other symptoms like GI problems and dysautonomia. Just because it’s not in the literature doesn’t mean it’s not happening. Doctors can be pretty bad documentarians in my experience.

 

[Trish]

Are you sure about that?

How would you feel if you went to an Ehlers Danlos (EDS) board and they were saying that ME was a vague, unaccountable diagnosis and while the people were likely ill with something, they didn’t have ME because there’s no such thing.

Thank you for clarifying the details about EDS for me, @WillowJ. I accept that I am not an expert or up to date on the latest diagnostic categories of EDS.

I see no problem with people here sharing their experiences and opinions, whether as doctors or patients, about the use and usefulness of some diagnostic categories. It is helpful, when a discussion starts here on some other condition, if we do have people with greater knowledge of that condition can enlighten us, as you have done.

As to your point about what it would be like to see ignorant comments about ME on forums for other conditions, my reaction would be to want to join in such discussions and provide evidence to show that those comments were wrong. I would not condemn the forum for those comments. Forums cannot control what individual members say, so long as it's within their rules. It is up to other members to provide information and evidence if they see inaccurate information on a forum. Then readers can read the discussion and make up their own minds.

A forum is very different from an information source like MEPedia, or an advocacy action.

On a forum, all sorts of inaccurate statements can be made, and others can disagree and discuss the evidence - it's an ongoing conversation, not a definitive statement of facts. It's a learning process, not an end product.

On MEPedia or advocacy projects, we need much higher standards of evidence in all the statements made if we are to be seen as credible.

 

[WillowJ]

Usually a forum has anti-bullying rules, and saying a diagnosis is invalid (when it’s a diagnosis that patients find useful and not off putting) is probably fairly considered bullying.

Maybe that should go in the moderation forum.

I am so tired of making these same points.

 

[Saz94]

Thank you for clarifying the details about EDS for me, @WillowJ.
I see no problem with people here sharing their experiences and opinions, whether as doctors or patients, about the use and usefulness of some diagnostic categories. It is helpful, when a discussion starts here on some other condition, if we do have people with greater knowledge of that condition can enlighten us, as you have done.

But that's not what typically happens here on S4ME. Typically, people with greater knowledge of the condition try to enlighten us, and then other members come along and poo-poo what they have said.

 

[Saz94]

Usually a forum has anti-bullying rules, and saying a diagnosis is invalid (when it’s a diagnosis that patients find useful and not off putting) is probably fairly considered bullying.

Maybe that should go in the moderation forum.

I am so tired of making these same points.

I agree.

 

[Cheshire]

How would you feel if you went to an Ehlers Danlos (EDS) board and they were saying that ME was a vague, unaccountable diagnosis and while the people were likely ill with something, they didn’t have ME because there’s no such thing.

I think the problem here is overdiagnosis, not the diagnosis per se. One of my friends just got a hEDS diagnosis by a doctor (an MD, not a naturopath) while he does not fit at all the criteria, he said to the doctor that it seemed unlikely to him, the doctor answered that all his patients, with symptoms similar to his, had hEDS. What if my friend, by chance, had one or two things that matched the hEDS criteria?

And concerning Lyme, I don't know what's happening in other countries, but in France, it's becoming totaly nonsensical. There are doctors who diagnose Lyme on the basis of an untested device that is supposed to analyse electromagnetic waves. People are self diagnosing themselves with that machine. Some journalists sent blood of healthy people to a laboratory that supposedly diagnoses Lyme, they all came back with a Lyme diagnosis.

This is not helping people who got Lyme and remained sick after treament.
This is not helping people who have EDS.
This is not helping people who got these diagnosis on weak basis.

Saying this is not dismissing people's suffering, it's exposing quackery.

 

[Saz94]

I think the problem here is overdiagnosis, not the diagnosis per se. One of my friends just got a hEDS diagnosis by a doctor (an MD, not a naturopath) while he does not fit at all the criteria, he said to the doctor that it seemed unlikely to him, the doctor answered that all his patients, with symptoms similar to his, had hEDS. What if my friend, by chance, had one or two things that matched the hEDS criteria?

And concerning Lyme, I don't know what's happening in other countries, but in France, it's becoming totaly nonsensical. There are doctors who diagnose Lyme on the basis of an untested device that is supposed to analyse electromagnetic waves. People are self diagnosing themselves with that machine. Some journalists sent blood of healthy people to a laboratory that supposedly diagnose Lyme, they all came back with a Lyme diagnosis.

This is not helping people who got Lyme and remained sick after treament.
This is not helping people who have EDS.
This is not helping people who got these diagnosis on weak basis.

Saying this is not dismissing people's suffering, it's exposing quackery.

Yeah but that doesn't mean that hEDS and chronic Lyme are not in themselves valid diagnoses. Just because some people over-diagnose them.

 

[WillowJ]

But that's not what typically happens here on S4ME. Typically, people with greater knowledge of the condition try to enlighten us, and then other members come along and poo-poo what they have said.

And then we start from scratch the next day, or week, or month.