For those of you who have a MCAS diagnosis, I was wondering...

[Amelie]

...do you still identify as a ME/CFS patient, too?

If yes, how do you make the difference between one syndrome, and the other?

Given that MCAS can also be the cause behind the post-exertional malaise, brain fog, etc.

And that, in my case at least, treating the MCAS has improved all other symptoms that other doctors had previously associated with ME/CFS...

Then shouldn't technically one diagnosis replace the other?

In the absence of clear biomarkers that could confirm that yes, there is a clear combination of both MCAS and ME/CFS in the same patient, aren't the two syndromes differential diagnosis rather than complementary ones?

Please note that I'm simply asking about your personal experience and opinion regarding how you identify as a MCAS and/or ME/CFS patient. Not expecting an official answer.

I know that, since I received MCAS as my primary diagnosis, I've been personally dropping the ME/CFS one because I believed that MCAS included all of my ME/CFS manifestations into it. But now, I'm starting to wonder if there isn't something I've missed or overlooked by doing so...

 

[Vasha]

Hi @Amelie

I also have MCAS and have been helped a great deal by meds for it (my story is really similar to yours over on the other thread, in terms of symptoms--the sun intolerance! such a big one--thanks for doing that!). I can eat now and be outside some, and those are huge things. It has definitely helped a large amount. I am so lucky to have been tested and have a doctor that knows about it.

I completely agree with your other thread that ME/CFS patients should be tested for MCAS and hope someday soon all will get that opportunity!

As to your question, I have a few thoughts. Some are medical/scientific, some are practical, some are personal/political.

Medical:
-You and I definitely don't have "CFS" according to the UK school (6 months of unexplained fatigue, without any physiological explanation). Probably most of us don't with proper testing.

-I have several other conditions that also serve as explanations other than ME/CFS, especially some autoimmune diseases

-But I probably still fit the bill for CCC and ICC, because I still have PEM/PENE. The exercise testing was also clear.

-For what it's worth, I think it's hard to know if PEM is still going to rear its head for awhile. Please be careful as you increase your activity (yay!!!! so happy for you). If you're wholly, fully better with MCAS treament, then maybe that's the full explanation.

-It might be worth asking a doctor whether they think you do indeed have ME still.

Scientific:
-We really don't know what ME/CFS is yet, or if it groups of patients will eventually fall away and be described according to new cohorts. IMO, it is likely a common end process from a variety of problems. But what distinguishes it from those problems? We tend to think PEM, but I am not sure. I have read descriptions of MS fatigue and lupus fatigue by patients that describe something that clearly looks like PEM to me. More research into exercise testing might reveal this in other cohorts.

-Either way, one way to think of some people's ME/CFS is as a complication of some narrower disease process. If you have really bad X, your energy metabolism and immune responses might be screwed up. X can vary, and for some of us, it will not be identified.

-But another way to think about ME/CFS as itself the underlying disease process that caused our MCAS and other problems.

-It could be both--different in different people. It's just hard to know if it's a differential diagnosis or co-morbidity/complication (if you're using a good case definition, not Oxford. If Oxford, everything is a differential diagnosis).

Practical:
-this is tricky because of the stigma that surrounds ME. Especially in some places, having it in your chart can reduce care.

-But as we know more about ME, having it your chart can make sure the doctors are taking into account as new treatments come out, and that they are tracking things that might matter to your health in the future.

-If you do have ME, then there are considerations with surgery etc (like with MCAS)

Personal/Political/Solidarity:
-At the moment, this is the big one for me. The stigma and neglect of the horrible disease that is ME/CFS is a terrible scandal. People's completely understandable and sometimes necessarily self-protective fears of "claiming" the label only slows progress and increases the stigma.

-Also, this community has a wealth of knowledge on so many of the co-mordidities and alternative diagnoses and such generosity--it covers things the MCAS and other groups I "fit" with don't necessarily.

-I am constantly trying to decide what to tell colleagues, friends, etc about my illness, and I want to contribute to consciousness-raising by claiming this label back and reducing the stigma. But I am not always sure of the results or what to do.

-This is very personal politics, and every person must do what works for them, and I would never, never judge someone for leaving the ME/CFS label behind if they can. But if we can, I think we need to CLAIM, and be LOUD, if we are going to fix this desperate situation for so many suffering.

-So I haven't left ME/CFS behind both because I'm not sure what it is but know I have PEM, but also because of the personal politics. If a medical finding really undermined this then sure, it's better to be accurate.

two or three cents.

-Vasha

 

[Amelie]

Hi Vasha,

First, I want to thank you for your very thoughtful answer! It really covers so much, and some points you brought up really resonate with my own reflections.

In a way, leaving my ME/CFS diagnosis behind does feel like a bit of a double edged sword to me.

If I were to keep it, then I’m afraid that it might bring confusion regarding what MCAS is, and the many ways that mast cell disorders might manifest in a patient. Given how under diagnosed MCAS already is, I’m afraid that using both ME/CFS and MCAS will give doctors the wrong impression that ME/CFS really is the same as having “chronic fatigue”, and a side effect of other illnesses rather than a distinct clinical entity.

I’m afraid that, as soon as a patient fits in the ME/CFS criteria (according to the Canadian Consensus definition, for example, which is the one I am most familiar with and was used to diagnose me) according to their symptoms, the doctor will automatically label them as a ME/CFS patient and stop looking for other similar / differential diagnosis.

But, at the same time, I’m somewhat scared that by dropping ME/CFS from my list of diagnosis, I am giving the wrong impression that ME/CFS is somewhat shameful or “not a real disorder”, when that is miles away from the message I want to send!

I’m afraid that ME/CFS will be perceived as nothing more than “unexplained fatigue” that only becomes a “real” disease once it has received another name.

Personally, I believe that every patient who has received a ME/CFS diagnosis (I use ME/CFS because, in Canada, they are used together and considered the same entity. However, I agree that CFS is over-diagnosed, and not quite reflective of what ME truly is) are severely impaired in terms of aerobic energy production and their ability to recover following effort.

They also share many multi-systemic manifestations. And I have a feeling that MCAS might be slowly emerging as a subgroup in patients that were previously diagnosed as having ME/CFS.

So, when I explain to people my new diagnosis, I also do my very best to highlight the symptoms and similarities that MCAS patients share with ME/CFS patients.

I’d be terrified at the thought of the medical profession treating patients that fit the MCAS criteria as being more credible in their complaints than ME/CFS patients (who might find themselves forgotten and treated as a somatic symptom disorder, because nothing still has been proven to be “physically wrong” with them). In fact, there’s already plenty wrong that has been highlighted with ME/CFS patients (changes in NK cells, cytokines, etc.).

If the problem doesn’t clearly involve mast cells, the disease process behind ME/CFS generates very similar manifestations regardless.

But I’m thinking that, just like ME/CFS tends to be perceived as nothing but “fibromyalgia fatigue” in patients who suffer from both ME/CFS and fibromyalgia…

If I keep using both diagnosis, ME/CFS might wind up being perceived as nothing but “MCAS fatigue”, when patients with a ME/CFS diagnosis that do not fit the MCAS criteria deserve to have researchers’ full attention, with said researchers effort being truly geared towards solving THEIR particular health problematic.

MCAS also deserves some attention, research, and for new and effective treatment options to be developed obviously.

But I’m not sure that mixing both diagnosis together is going to help either group…

As you can see, this is still rather complex for me, and there doesn't seem to be any perfectly clear answer to that dilemma… Lol!

 

[Vasha]

Hi Vasha,

First, I want to thank you for your very thoughtful answer! It really covers so much, and some points you brought up really resonate with my own reflections.

....But I’m thinking that, just like ME/CFS tends to be perceived as nothing but “fibromyalgia fatigue” in patients who suffer from both ME/CFS and fibromyalgia…
....
If I keep using both diagnosis, ME/CFS might wind up being perceived as nothing but “MCAS fatigue”, when patients with a ME/CFS diagnosis that do not fit the MCAS criteria deserve to have researchers’ full attention, with said researchers effort being truly geared towards solving THEIR particular health problematic.

MCAS also deserves some attention, research, and for new and effective treatment options to be developed obviously.

But I’m not sure that mixing both diagnosis together is going to help either group…

As you can see, this is still rather complex for me, and there doesn't seem to be any perfectly clear answer to that dilemma… Lol!

Hi @Amelie -

You might be interested in this recent thread about whether fibromyalgia is a "threat" to ME/CFS.

http://forums.phoenixrising.me/inde...ger-to-chronic-fatigue-syndrome-me-cfs.45051/

MCAS is still so obscure at this point that I don't think it's the same issue, but it overlaps with your concerns.

In the end, I just don't think we know when some of these diagnoses are "mixed" or when they are co-morbidities that can occur independently in different people because we don't know enough about etiology. Many of us have POTS, hypermobility, various autoimmune issues, etc -- which are the tail and which are the dog? Dysautonomia can explain a great deal, and mitochondrial dysfunction causes dysautonomia... and so on.

So in an individual medical case, I'm not sure I can see a good reason to pick and choose at this point. If CCC criteria are met, then an ME/CFS diagnosis is justified. If MCAS criteria are met, then an MCAS diagnosis is justified.

Doctors' tendency to see ME/CFS as "just" fatigue from another cause more broadly has to be addressed with better training of doctors! Our decisions about what diagnoses resonate with us should have nothing to do with that (though I get that they can).

In any case, I think this is really a personal decision about what resonates with you. I am pretty new to this merry-go-round, and others here have really thought a lot about this kind of thing and may have other thoughts...but I don't think there's a wrong answer.

-Vasha

 

[Amelie]

I fully agree with you, @Vasha ,

I really don't think there's a right or wrong answer to whether one should use only one or both of these diagnosis.

I'm really trying to gain more insight into what other people believe, think, and/or feel more comfortable with in order to feed my own reflection on the subject. But I assure you, I do so absolutely without judging or thinking that the conclusions others have personally reached are faulty.

I have met, in the past, a patient suffering from SLE who was actually diagnosed by her doctor as having both lupus and ME/CFS (as opposed to lupus with "lupus fatigue"). That was done before PEM became a widely recognized criteria for ME/CFS, mind you, but I'd still be intrigued by the fact that her doctor had recognized both disorders in that patient, rather than assuming that her profound exhaustion following minimal exertion was simply caused by the lupus.

In a way, this was encouraging for me to hear, because this truly showed that ME/CFS was starting to be recognized as a full entity rather than a diagnosis that would be offered to the patient only if the fatigue had "no other cause or explanation than ME/CFS".

And I remember that one of the things I personally shared with SLE patients was elevated anticardiolipin antibodies (ACA), which are a form of anti-mitochondrial antibodies... So, at some, point I was wondering if the kind of fatigue experienced by lupus patients and ME/CFS patients couldn't have to do with the ACA attacking the mitochondria and therefore impairing cellular energy production.

(Finding this particular article had gotten me pretty excited back then.)

However, I feel like the differences between SLE and ME/CFS are a little bit clearer and better defined to me than between MCAS and ME/CFS (a little, because the lines between both are still heavily blurred in many areas)...

The patient with both diagnosis of lupus and ME/CFS had a pretty solid personal concept of which symptoms belonged to her lupus, and which symptoms belonged to her ME/CFS, though.

In the case of MCAS and ME/CFS, the two of them look to me like such twins in terms of the clinical manifestations associated with them that it's a little harder for me to understand the difference.

I remember reading the last page of this document and going "Wait. Haven't we just essentially described the reality of a ME/CFS patient?"

The fact that MCAS patients often also suffer from dysautonomia (ex: POTS), fibromyalgia, and EDS strongly reminded me of the fact that ME/CFS patients are also often suffering from these same disorders as well...

Oddly enough, I have a better concept in my mind of what fibromyalgia v.s. ME/CFS is...

But when it comes to MCAS, it's like I just don't really see any clear difference between the two, especially when the ME/CFS patient suffers from any environmental and/or food intolerance (whether they fit the MCS criteria or not).

The thing I have found, too, is that when I talk about skin reactions to ME/CFS patients, a lot of them don't identify as having any...

But then, if I mention how I'll get some red plaques on my abdomen and/or stomach when I take a bath, they'll go "Oh yeah! I do that, too! And sometimes, it really itches but it's gone as soon as the bath is over!" They tend to think that's just normal vasodilatation and everyone has it.

Or they'll see pictures of the rosacea I have on my cheeks (that is slowly clearing up thanks to Xolair) and say they have the same, but for them it's just "rosacea", and so many healthy people have it that they never really considered it as having anything to do with their ME/CFS (even if it began appearing around the time they started developing other symptoms).

They will also have hot flushes a lot! But will think it's due to the fatigue and hormonal changes caused by ME/CFS...

I often find that there seems to be little clues pointing towards mast cell activation even in ME/CFS patients that don't report any "allergic" reactions to foods or their environment.

You do bring a very, very good point, I must say, regarding the fact that since we don't know enough about the etiology behind a lot of these disorders, and which one is causing the other and vice versa, it might not yet be that important to drop ME/CFS from our list of diagnosis when we get diagnosed with MCAS.

My immunologist seems to consider ME/CFS and MCAS diagnosis as mutually exclusive. But I haven't spoken to Dr. Hyde since I received my MCAS diagnosis and gotten the chance to ask him what he thought about it.

Actually, I'm not even sure he thought I was a true ME patient (since he has his very own proposed definition of ME)! Lol!

[Edit: I almost forgot!!! Thank you for the link to the article, too! It is indeed very interesting! ]