Co-morbidities - prevalence in people with ME/CFS

Post copied from this thread: EDS, hypermobility, and the link, if any, to ME/CFS

I didn't know where to post this, but the ME Association had an online survey about common health conditions in pwME. The current result:

Which of the following conditions, which are more common, or appear to be more common in people with ME/CFS, do you currently have:

Allergies 10.09%

Diabetes - type 2 (non-insulin requiring) 0.84%

Endometriosis 14.09%

Fibromyalgia or a fibromyalgic component 8.27%

Hypermobility syndromes - including Ehlers Danlos Syndrome 3.67%

Interstitial cystitis 1.93%

Irritable bowel syndrome 11.31%

Multiple chemical sensitivity (MCS) 15.55%

Overactive bladder 6.13%

Mast cell activation syndrome 2.38%

Migraine type headaches 9.82%

Postural orthostatic tachycardia syndrome (PoTS) 7.09%

Raynauds's phenomenon (very cold hands and feet) 5.16%

Temperomandibular joint dysfunction 3.65%

 

Copied post

That is really quite interesting because comparing the range of conditions gives some sort of basis for judging reliability. Most of the results are very much in line with the normal population.

Allergy is said to be about 10%
Raynaud's is about 5%
Diabetes is around 1%
and so on.

The intriguing thing is that hypermobility is normally quoted as around 20% in the normal population, although figures are said to vary from 2% to 57% - both of which are pretty ridiculous. Somewhere around 10% of younger people score positive on Beighton. This survey gives 3.67%. Maybe the wording of the questionnaire was a bit narrow but this does not look like a high rate.

What looks likely from the list otherwise is that there may be some bias to what diagnoses people have been given in the context of ME. Multiple chemical sensitivity might be considered part of the general intolerances of ME anyway and maybe was a popular diagnosis before ME became a widely used term?

The 'fibromyalgia component' rate looks quite low if a lot pf PWME have pain.

 

I dont know about others but i have pain, that i consider to be part of my ME, so i dont know what a 'fibromyalgia component' means really. So when i took the survey i didnt tick that, perhaps i should have done.
The MEA make much of ME & fibro being different, so afaic if i dont have an FM dx, i wouldnt tick yes to that, (unless i had pain that matched the FM criteria but i didn have an official dx, when i guess i might tick it based on the 'component' word.

But i do have pain, which is significant. As always with questionnaires, wording is everything

 

Plus maybe sometimes having diagnoses that may not have much basis - like MCAS.
And the missing bits may be mostly diagnoses that do not have a very well defined basis. The diabetes, migraine and Raynaud's come out right.

Maybe the most interesting bit is that allergy rate is normal - since most people know if they have significant allergies.

 

Agreed. If there was any way of making it possible (and I think the ambiguity of individual's different personal threshold levels being unconfirmed would be an issue) this is one where it would be useful to have a 'what have you almost certainly got' (with the only catch to that being that it could be caused by something else) but haven't been diagnosed EDIT* vs diagnosed on a separate survey. The fact the 2007 basically suggested no investigations means a lot in this context.

What are the chances of someone getting diagnosed if they have dodgy notes all over their records, can't get to an appointment (even when less severe you are negotiating other commitments and having to ration time of work vs what you need) and can't speak when they do. I explicitly got told by my GP that I wasn't allowed to mention certain things if I was given a referral ie 'don't mess with the CFS diagnosis, this is just about x'

I don't know how anyone got diagnosed in our country if they had situations anywhere similar to mine and didn't get them sorted before they got ill. I get that a long list from most people on that one would be seen by cynics as hypochondria rather than a mere outcome/consequence of their guidelines+dumping pot strategy and it makes me so sad that we are all too ill and the attitude too ingrained to see the way out of it happening.

But given I'm certain this is a dumping pot of convenience it is a pretty important area to work out how to look into what it might actually include (which might be a separate thing to this, but is pretty important to take out misdiagnosed and identify comorbidities to get anywhere surely).

Having said that I've had my thumb pulled quite a lot by various different physicians - I have v stiff hands and always have had but it is done in an assumptive way where they expect it will be hyperflexible so it is almost amusing when their autopilot check gets such a stubborn unexpected response - so I got the impression hypermobility at some point over the years has been an almost assumed association.

 

The ME Association survey doesn't allow you to vote unless you tick at least one box. Even for an informal survey, this will presumably give an inaccurate result.

 

I have left a message on their FB post promoting the survey

 

I'm surprised that IBS is no more common in ME in this survey than in the general population. Or perhaps ME patients have gut issues, but don't call them IBS.

 

There might be confusion between IBS and IBD. The symptoms overlap to some degree, though IBS is not thought to lead to IBD.

I was not diagnosed with IBD until I had a colonoscopy, some four years after onset. Prior to that, my symptoms had been more consistent with IBS (and those symptoms arose just a few months after the onset of ME/CFS).

I suppose one could develop both IBD and IBS by chance, but it would seem reasonable for someone with IBD alone to go ahead and check the IBS box, if that were the only option offered.

IBD (Inflammatory Bowel Disease)
Symptoms: The symptoms of IBD vary from person to person, and may change over time. The most common symptoms for CD* and UC** are frequent and/or urgent bowel movements, diarrhea, bloody stool, abdominal pain and cramping. People with IBD may also report symptoms such as fatigue, lack of appetite and weight loss. IBD is characterized by times of active disease (flares), when symptoms are present, and times of remission, when little or no symptoms are present. [*Chrohn's Disease **Ulcerative Colitis]

IBS (Irritable Bowel Syndrome)
Symptoms: Many people experience only mild symptoms of IBS, but for some, symptoms can be severe. Symptoms can include cramping, abdominal pain, bloating, gas, mucus in the stool, diarrhea and/or constipation. Similar to IBD, IBS is characterized by times when symptoms are present and times when little or no symptoms are present. Unlike IBD, IBS does not cause inflammation, permanent damage to the GI tract or an increased risk of colorectal cancer.

https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/ibd-and-irritable-bowel.pdf

 

Reply on FB from Charles Shepherd

 

Probably an issue of everything being put to the "chronic fatigue". I have IBS. I do not have a IBS diagnosis, it's all attributed to the ME, or disregarded. And lots of people told they have IBS probably don't have it on their record, with the belief that writing it down makes it real, or something like that.

Which is ironic considering that GI issues are usually not part of any definition of ME/CFS, despite being common. But let's attribute it anyway. Amazing what happens when people don't think something is important, even if it is.

 

I don’t remember if I did this survey, but it would random whether I ticked IBS or not.

Though I did have an episode of IBS following following salmonella infection some years earlier, my IBS type symptoms followed on from my ME and occur either in PEM or in association with my subsequent food intolerances. I have not been given a separate IBS diagnosis, and have not decided in my own mind whether on not this would make sense given my IBS type symptoms are contingent on my ME.

I have similar issues in relation to migraines, bladder issues and orthostatic intolerance all of which vary with my current ME severity and/or PEM and have not been formally given a separate diagnostic label.

 

I think Fibromyalgia is a uniform all over kind of pain rather than in specific muscles. It's a diagnosis that is best avoided as the medical profession treat it as if it is psychosomatic and use it to label patients as "crazy".