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POTS Associated with Significant Symptoms & Impairment -- BMJ article & pop press response

Tom Kindlon

Senior Member
Messages
1,734
Some extracts from the paper:
Patients with CFS
Patients with CFS were consecutive patients referred to the Newcastle Royal Victoria Infirmary who fulfilled the Fukuda 1994 diagnostic criteria for CFS8 who had been shown on haemodynamic testing to not have PoTS.

It isn't alluded to explicitly but such a method of defining CFS means the comparisons between and CFS may not be true overall i.e. if people with CFS and POTS were included, the overall averages for CFS could be different.

Around 20% of the total cohort reported having CFS
Exact percentage is 21% (see Table 1).
Note: this is the percentage previously diagnosed with CFS. The actual percentage who could have CFS is higher (see later quote)
 
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Tom Kindlon

Senior Member
Messages
1,734
Table 2 makes up a significant part of the paper:
Comparison between the postural tachycardia syndrome (PoTS) with comorbid chronic fatigue syndrome (CFS) and PoTS without comorbid CFS

However, there is a (quite big, in my opinion) problem as:
When we reviewed symptoms in the two groups that would be consistent with the diagnosis of CFS (Fukuda), of patients with PoTS who did not describe comorbid CFS, 43% of them would actually have met the diagnostic criteria for CFS.
This is the problem with paper research - some, perhaps quite a lot, of those who are described as POTS but not CFS may have actually been POTS + CFS (i.e. 43% if this figure translated perfectly to a CFS diagnosis).
 

Tom Kindlon

Senior Member
Messages
1,734
The POTS and CFS were more impaired in some ways and less impaired/similar in other ways in comparison to the POTS but no CFS (this is based on whether CFS had previously been diagnosed)
Comparing the symptom burden of patients with PoTS with and without comorbid CFS/ME

We went on to consider the total PoTS cohort of 136 patients and compared those with (n=27) and without (n=109) comorbid CFS.

When we considered the number of symptoms that they first noticed before being diagnosed with PoTS, those without CFS had significantly more symptoms (p=0.0004), with the majority of these symptoms being palpitations, dizziness, memory impairment, breathlessness, light-headedness and muscle aches.

Twenty-three (21%) of the patients with PoTS and without CFS were currently receiving disability benefit compared with 13 (48%) of the patients with PoTS and CFS (table 2).

The participants with PoTS with no CFS appeared to be more able to exercise, with 44% of the patients with PoTS with no CFS currently engaging in any form of exercise compared with 29% of the patients with PoTS and with CFS.

In those who were not exercising, the vast majority in both groups felt that this was because of fatigue or because they knew it would worsen their symptoms.

In terms of hours that they had spent performing activities, there was no significant difference between patients with PoTS with and without CFS in terms of household-related activities, social and recreational activities and family-related activities; however, the PoTS without CFS group did appear to have spent significantly more hours in work-related activities.

Interestingly, 34% of the PoTS without CFS group had spontaneously reported episodes of loss of consciousness in association with their symptoms compared with 18% of the PoTS with CFS group.
 
Messages
1,446
.


ThisTelegraph article is even worse - why can't even one journalist grasp that the WHO Neurological classification was 1969!? And where did the name "shirker syndrome" appear - I've never heard of it before.
.
"People with ME have famously received rather short shrift. Back in the 1970s, psychiatrists labelled cases a “mass hysteria”. It wasn’t until 1993 that it was finally accepted as a real condition, but even then, people with the disorder had to struggle to convince their doctors, friends and employers they weren't simply imagining the whole thing. In an effort to make people take it seriously, the term “chronic fatigue syndrome” (too vague) was changed to “myalgic encephalopathy” – but “yuppie flu” and “shirker syndrome” remained popular alternatives..."


For goodness sake - the name Myalgic Encephalomyelitis was changed to Chronic Fatigue Syndrome.

Thank everyone who Commented yesterday. TBH I think we are going backwards... the media just won't give up - I'd rather have no article than the relentless onslaught of innaccuracy and rubbish.

Very demoralising - and so many of the comments are awful as usual.

Spiteful people think we should be kicked up the arse.

.
 
Messages
15,786
Thank everyone who Commented yesterday. TBH I think we are going backwards... the media just won't give up - I'd rather have no article than the relentless onslaught of innaccuracy and rubbish.
I thought only one of the articles was particularly horrible. And I think it's always good when we can make comments and push a few core points in response to the turds. The turds don't change their thinking of course, but someone else might find short and focused responses to be persuasive.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
.ThisTelegraph article is even worse - why can't even one journalist grasp that the WHO Neurological classification was 1969!?

I posted a comment correcting that. Actually, I thought overall it was a good article - sympathetic to us and attempting to address the psychology of those who fail to understand and sympathise.
 

OverTheHills

Senior Member
Messages
465
Location
New Zealand
I'm not sure if this has been posted yet.
It's a commentary on the research paper and the Telegraph article.
It says that ME & POTS can be comorbid:

Do doctors confuse ME with a heart problem?
NHS Choices

17th June 2014
http://www.nhs.uk/news/2014/06June/Pages/is-me-often-a-misdiagnosed-heart-rhythm-problem.aspx
The NHS Choices article manages to put rather a negative spin on this news so I have posted my true personal experience with beta blockers transforming my life by controlling my POTS pretty well, and encouraging other patients to press for testing. It is first comment.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
Gin
This is very interesting as I have CFS and have OI and many POTS type symptoms although still unclear if I have a true diagnosis of POTS. My endo and cardiologist gave me Florinef for the POTS/IST symptoms and said it is all on the same continuum of dysautonomia.

I believe that POTS is a part of CFS for many sufferers (but not for others.) I did not have any POTS symptoms prior to developing CFS following mono/EBV. I would hope that the article does not simply dismiss CFS as "misdiagnosed POTS" but rather explains that autonomic dysfunction such as POTS can be a big part for many CFS sufferers and can also be an independent diagnosis for non-CFS sufferers.

True, well-written education about this could be great, so I will try to be hopeful that it is an objective and fair article... maybe ???o_O

Gingergirl you need a TTT - tilt table test to test for POTS

The news article received LOTS of very negative comments from the public about POTs on their site apparently which has upset many POTsies


to which a friend of mine posted this comment below which she has given me full permission to cite -

wait... so if i was dumb then i wouldn't have pots?? time to take all the marijuana's.



(On the POTS facebook pages the consensus is that educated people are diagnosed because they are aware, can afford medical care and own laptops so can access the internet.)

cheers all

Ally
 
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Gingergrrl

Senior Member
Messages
16,171
Gingergirl you need a TTT - tilt table test to test for POTS

@Allyson, I actually have not read the article yet but wanted to respond to your comment. When my tachycardia first started (in Jan 2013) it was about six months after I had mono from EBV and then had another unknown virus. Initially the tachycardia occurred exclusively in my sleep and would wake me up. My HR was often in the 170's and the cardiologist captured it multiple times while I was wearing a Zio Patch monitor. She said it was called "Inappropriate Sinus Tachycardia" b/c my heart never left sinus rhythm. She said she had seen it in other women in their 30's and 40's who had mono in the previous year. She gave me a beta blocker (initially metoprolol but then it was switched to Atenolol which I still take to this day.)

I had periods of no tachycardia and then the whole phenomenon switched so instead of it waking me up in my sleep, it would happen when I stood up. The worst was in the morning and literally every morning when I stood up my HR would be in the 150's. The Atenolol became less effective and I was no longer able to stand in the shower and had to buy a shower chair. Even with the chair, the shower in incredibly fatiguing and I feel like I could pass out (although I never have.)

My cardiologist said that I did not need a TTT b/c the phenomenon was captured multiple times. She felt I had low blood volume (and I also have very low blood pressure) and she suggested Florinef. She said whether it was "True Pots" or on a continuum, the Florinef could still help and so far, it is helping me. She has me taking it only M,W,F to taper up very slowly (I am very sensitive to meds) but I have been trying to reach her for two days to ask if I can now increase the dosage to every day.

My cardiologist is not familiar with CFS although she is a kind, supportive person and very smart. @Allyson, if you or anyone else has any thoughts for me how to proceed, I would really appreciate it. And just to clarify in case you haven't seen my initial post, I have the classic CFS symptoms besides tachycardia (extreme fatigue, PEM, etc.) although at present, the cardiac symptoms are the worst.
 
Messages
55
Location
London, UK
I was diagnosed with "Inappropriate Sinus Tachycardia" after 24 hour monitoring and a TTT showing that I had POTS but wasn't diagnosed. Maybe the cardiologist I saw didn't know about the term POTS, I don't know why not if so.

I take Ivabradine for the Sinus Tachycardia which is a specific targeted drug (I think not available in the US). It works, in that as the dose rose my tachycardia reduced, but unfortunately not as far as normal. Beta Blockers made me unable to function and suicidal so I just put up with the raised heart rate since at least it is lower than it was. I take salt tablets for the low blood pressure which to be honest don't really seem to work, maybe 1 point difference is all.

I also have lots of other ME/CFS symptoms so I don't feel misdiagnosed.

The telegraph article immediately annoyed me, it seemed blatent mis-reporting to me without looking up any details. I hate any mis-reporting on ME/CFS so I was cross. When I read the trial details and the NHS site stuff, and that confirmed the mis-reporting I was even crosser. Why do journalists mis-report? What is the purpose? More sensational perhaps, but really is an article about ME/CFS going to attract people to buy the newspaper in such a case?
 

Gingergrrl

Senior Member
Messages
16,171
I was diagnosed with "Inappropriate Sinus Tachycardia" after 24 hour monitoring and a TTT showing that I had POTS but wasn't diagnosed. Maybe the cardiologist I saw didn't know about the term POTS, I don't know why not if so.

I take Ivabradine for the Sinus Tachycardia which is a specific targeted drug (I think not available in the US). It works, in that as the dose rose my tachycardia reduced, but unfortunately not as far as normal. Beta Blockers made me unable to function and suicidal so I just put up with the raised heart rate since at least it is lower than it was. I take salt tablets for the low blood pressure which to be honest don't really seem to work, maybe 1 point difference is all.

I also have lots of other ME/CFS symptoms so I don't feel misdiagnosed.

The telegraph article immediately annoyed me, it seemed blatent mis-reporting to me without looking up any details. I hate any mis-reporting on ME/CFS so I was cross. When I read the trial details and the NHS site stuff, and that confirmed the mis-reporting I was even crosser. Why do journalists mis-report? What is the purpose? More sensational perhaps, but really is an article about ME/CFS going to attract people to buy the newspaper in such a case?

@Griffin I purposely decided not to read the article as I have such limited energy right now and knew that it would annoy me if had a bunch of misinformation. I have so much empathy for you as our situations with IST, POTS, and CFS sound so similar (as we were discussing in another thread.) I take the electrolyte salt tablets too and not sure if they make a difference but I figured they can't hurt especially now that I am taking Florinef daily.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
That daily mail article is horrendous.

ME, which affects around 250,000 people in the UK, has long proved difficult for doctors to diagnose.
In the absence of a reliable clinical test, they often rely on detecting symptoms such as tiredness, mood swings and memory problems.

Since when is ME/CFS diagnosed based on mood swings?
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Have to admit that I've mixed views on this.

If it was a simple matter of misdiagnosis then of course its a good thing that 30% of patients could be pulled out of the CFS wastebasket but surely (if I recall correctly) Newton previously reported much higher rates of autonomic dysfunction in ME/CFS patients (as have other researchers - in some cases 100%).

As I understand it POTS is one particular 'flavour' of dysautonomia - so what are we saying? Is autonomic dysfunction a feature of ME/CFS or not or is it just the case that 'POTS' is a treatable form. Does identification of POTS then exclude a diagnosis of ME/CFS or not? Does not finding POTS in ME/CFS patients then preclude considering other forms of autonomic dysfunction?

I'm confused!

If you check out the Canadian consensus ME/CFS definition.. in that definition (see page 8) http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf
"6. At Least One Symptom from Two of the Following Categories:
__ a. Autonomic Manifestations:

orthostatic intolerance - neurally mediated hypotension



(NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension; " etc

The other two catagores are immune manifestations and neuroendocrine manifestations.
........

POTS can be one of the major symptoms of ME. If they studied ones based on the Canadian consensus criteria.. I wonder what percentage of these would have POTS? esp since 25% of ME/CFS people have been found to have POTS (I didnt look at the criteria used for the ME/CFS but I suspect it wasnt the canadian one).

This is why an average GP should not be diagnosing ME/CFS.. as most GPs would not be able to tell the difference between someone who ONLY has POTS by itself with someone who has ME/CFS. We need specialists trained in these illnesses and tilt table testing or autonomic dysfunction testing should be made a must thing for all ME/CFS people as so many of us have this issue. (what was that other study done in which it was found that over 90% of us have NMH? or Orthostatic hypotension). I think nearly every ME person probably has some autonomic dysfunction going on of some kind or another.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Doesn't it boil down to explaining all of the person's CFS symptoms by the new diagnosis of POTs? It's co-morbid if there are still symptoms that the person has that meet a CFS dx and these cannot be explained by POTS/NMH etc.

The big issue is that POTS patients get so many of the ME/CFS symptoms.. eg IBS, nausea, headaches, dizziness, exhaustion etc. The two illness can be quite hard to tell apart (unless a very good ME/CFS definition such as the canadian is used). The crappy CFS definitions out there, a POTS patient would fit.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
If PEM is taken into account, and differentiated from exercise intolerance, it should be fairly clear if the patient has ME, OI, or both. The problem is that PEM isn't really acknowledged as a symptom in the UK, much less a central or required symptom of an ME diagnosis. The CFS definition being used is broad enough that OI qualifies as CFS there, especially since they typically won't order the tests to exclude OI (or much of anything else) once CFS is diagnosed.

They badly need to clean up their ME/CFS criteria and end the absurdity.

The PEM thing is tricky too as people use different meanings for what that is. eg some will say that PEM is getting unwell from exercise and this unwellness or the symptoms continue longer then it should do. I can say that my POTS can do that too!

If I collapse with my POTS (or just have a very bad episode with it), it can take a day or two to recover and this isnt a ME crash thou its presentation does have lots of the same symptoms eg exhaustion, headache etc. I'll stay in a very bad state till I manage to boost my blood volume some. So this can look just like what some may call PEM triggered off by exercise.

What POTS doesnt do as far as Im concerned.. is that thing where one is still okay after one stops exercising but with the crash coming in later on (the delayed after exercise thing).
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I definitely have both POTS and CFS and know they are related just not sure how. When I stood up from bed this morning my HR was 154. I took the beta blocker, 1/2 Florinef and almost full bottle of water and now propping up my feet as my cardiologist recommended.

I suggest you take a couple of glasses of water before you even get up. I find it can help some quite fast, its crazy how fast water seems to get into the system eg within 15-20 mins it can start to help a bit. Then get up.