Are PWME at greater risk of cardiovascular disease & diabetes? If so, what can we do about it?

No, what I was describing was not an 'additional heath problem'. Its at the core of my illness. Its part of the consequences of my constantly high levels of inflammation.

High levels of inflammation are a well established risk factor for CVD generally, at least when we use cheap, readily available measures like CRP:

Ridker PM, Buring JE, Shih J, Matias M, Hennekens CH. Prospective study of C-reactive protein and the risk of future cardiovascular events among apparently healthy women. Circulation. 1998 Aug 25;98(8):731-3.

CRP isn't usually abnormally raised in PwMEs, but these studies are not focusing on those with abnormally raised levels. Being on the high end of the normal scale increases your risk relative to being at the low end.

The part we don't know yet is what role inflammation plays in ME more generally, and if it does, whether it is the type of inflammation that raises CVD risk. But my money right now would be on "yes" to both questions. Because tachycardia is such a ubiquitous feature of ME, and I suspect this cannot be put down to inactivity alone.

 

Yep, with an amendment - Dying doesn't scare me, its not having a real life that is the problem.

 

I think the risk of diabetes and CVD is probably increased. I think the profile is different though. I think ME can look like mild diabetes if there is enough of a problem with sugar metabolism in ME. However this will increase insulin, and hence insulin resistance, over time. I suspect that type 2 diabetes is one long term outcome of ME, but not in all patients.

On CVD, we do get a lot of diastolic heart failure, mitral valve failure, and so on. However I am reminded that many hundreds of patients followed for a long time by John Whiting, a local specialist, did not get atherosclerosis. Those that did were smokers. The lesson is if you have ME then quitting smoking should be a priority.

So the CVD rates are probably high, but maybe not higher than the general population. It is more about what type of CVD and the average age it occurs, which is probably younger than the general population.

 

I agree, a really important message @alex3619 . I should never have been smoking with ME. I am paying severely for all the years of smoking now. My parents were smokers well into their seventies. I am paying decades earlier than they - I know ME has helped caused me to be susceptible lung and heart problems earlier.

 

@ChrisH
Thanks for your interesting post.

Could I just check that I am interpreting correctly when I conclude that, once your aortic stenosis was corrected at around 70, you had 13 years without heart problems ( but with ME) until your recent surgery. In other words, once the heart problems began to develop, there were still successful treatments that could be used.

If that is the case, you are giving me encouragement. I am told that I should feel considerably better after the regurgitation is dealt with.

Hopefully others who are worried about heart problems might find your example of successful treatments an encouraging sign. Maybe pwme should be pushing their doctors to do heart checks regularly although i doubt whether this would be well received in UK.

Would you mind saying where you are based in the world? Sounds as if you have good heart surgery.

And yes, I must look for the article by Cheyney. And I hope your ME is not very severe. Are you having any treatment for it?

Good wishes with your recovery from this year's surgery.

 

@Binkie4; thanks for your good wishes. The first surgery in 2004 was before ME, and I had a good 2 1/2 years before it hit me--the surgery returned me almost to my previous--healthy and active-state. Then 10 years of ME--large remission in the first year, none since, and a decline towards the end of 2016, presumably due to decreasing efficacy of the bioprosthetic valve. It took me a longer time to recover from surgery this Feb, but it seems the surgery was successful--the valve is operating properly according to an echocardiogram and my own experience. So I am back with just ME and being 84-not a good combo! But yes, if you have some kinds of heart problem, diet (see Esselstyn, "Prevent and Reverse Heart Disease") and if necessary surgery (bypass, valve replacement) can indeed help.

I live in Victoria, British Columbia, and we do have a good heart surgery unit. I am not under any treatment for ME because it is not clear to me that there is much out there that really helps. I do take the usual supplements, and have been experimenting with Low Level Light Therapy for a couple of years, with small results but persisting with the Vielight Neuro (long thread on PR) and now trying Sytrinol and Kudzu to see if they can very partly duplicate that old drug Naviaux used on kids with autism--too early to tell yet if this is really doing any good.

 

Thanks @ChrisH

That's a useful summary. It seems unfortunate that having gone through surgery a second time, you cannot reap the full benefits because of the ME. I am not familiar with the drugs you mention but after 6 months on acyclovir, sense there might be some improvement but, as I said before, it is hard to disentangle from the heart issues. I have certainly deteriorated in the last 2 years or so. I don't know if you had a viral onset, or viral reactivation.

My hope ( fingers and toes crossed) is that I will have a successful repair and then feel the benefits of the acyclovir.

I'm waiting to be called back for preoperative tests and think the surgeon will investigate whether minimally invasive access is feasible to enable a smoother recovery. Am also concerned about anaesthesia- did you have any problems and was your anaesthetist familiar with anaesthesia for people with ME?

If I am too curious in my questioning, please tell me. I have not encountered on PR or here anyone other than you who has had valve surgery, although there are one or two expecting to face it in the future, so am glad of the chance to learn.

Once again, good wishes for your recovery.

 

I do not recall Luis saying anything definite. I am not aware of any evidence for increased risk of heart disease. I think he may have been speculating. Unless there is actually some evidence I would not think anything needs to be done. Exercise is good for keeping away hypertension but my impression is that most PWME have rather low blood pressures anyway - from what they say, though.

Rodney Graham and I wrote the first paper on hypermobility and mitral valve prolapse. The paper reported an association but in fact there was none (it's a long story). Subsequently, others looked again and found no association. Mitral valve prolapse is quite common anyway so some PWME will have it but I am doubtful it will be more than everyone else.

By far the most likely things to be helpful I would think are keeping body weight to near ideal and not smoking.

 

@Binkie4--my best guess is that my ME was triggered by my move into a apt near the top of the tallest building in central Victoria (as of 2006)--crowned with a bristle of antennae of various shapes and sizes. When I began to suspect this I rented a Stetzer meter and found VERY high levels of high frequency pollution in my power lines, and quite high RF around the building--it was a cell tower among other things. Martin Pall sees things this way too. I cannot of course prove this, but there was no evident viral onslaught. And the beginning came in waves at first, until it settled in for some months, then miraculously it largely lifted for the summer, succumbing to something like pacing, though I did not know the term at the time. A second choice might be that I unwisely accepted a joint flu/pneumonia shot --that too would fit into the time, but RF remains my first choice of trigger. I should have mentioned that Paul Cheney's "The Heart of the Matter" was freely available on the web a while back--have not rechecked.

 

I guess not. Dr Hyde told me I would live to be 95, since risk of death due to sports injury and driving are almost inexistent...

 

Non-existent would be the normal UK English word to be used there.

Sorry about being pedantic and off-topic.

 

@ChrisH

I understand from your last post that you believe your ME to be linked to radio frequencies around your tall apartment building. I am afraid I am not familiar with this subject at all, apart from knowing that some find sensitivities to mobile phones, microwaves etc. I don't know if we have a thread on this. Maybe someone else may know more than me.

I am concerned about anaesthesia with ME, have copied a few short articles to give to my surgeon, but am wondering about issues around hydration prior to surgery to cover low blood volume etc. Were you able to have any special treatment for anaesthesia to cover ME?

I have copied an article by Dr Cheney from " the Heart of the matter" to provide some substance for discussion with the surgeon. His preference is not to do a full sternotomy, but a more minimally invasive technique. Do you have any experience with this?

@Jonathan Edwards - thank you for your input. Weight , exercise and no smoking all sound good advice. When I developed ME, I was a reasonable weight and exercised regularly. I have never smoked. Now 10 years later, I have gained weight which seems resistant to my efforts to deal with it, and I can't exercise, in fact I cannot tolerate being upright for long. I think ME has brought more risk of heart problems.

 

@Binkie4; on RF, you might start by reading Martin Blank's excellent little book, "Overpowered." Or go to Youtube and check out some of Devra Davis's talks--she tends to focus just on cell phone stuff (well covered by her book "Disconnect") but there are also now WiFi, "smart" meters, etc. etc. Martin Pall, whose earlier book "Explaining Unexplained Diseases" was very influential on many, including Cheney, now thinks it is responsible for the epidemic of heart failure, for ME/CFS, and other things. Martha Herbert and Cindy Sage have two essays on the possible/probable connection to the rising plague of ASD. It is one of the great hidden scandals/stories of our age in my opinion. The corporate interest rules.

I had no problems with anaesthesia of which I am aware, but was rather confused for a couple of days (and was given Risperdal until I and my daughter caught on and stopped it!) If the "minimally invasive" through the ribs route is possible in your case, it should certainly result in a much less damaging surgery than the sternotomy, which is really rather brutal. I have no experience of it, but it sounds good. But the human body is amazing--it recovers even from such insults!

 

@Binkie4; a couple more points. I had no talks with an anaesthetist before my last surgery that I recall--but it was an emergency situation--I knew something was going wrong, but it took three tries before Emergency took me seriously enough to admit me, by which time I had accumulated over 2 litres of fluid in my lungs (not much space for air!); I had angiogram that evening, and on to surgery the next morning--I was probably fairly doped up, and don't recall much of what happened.

Paul Cheney made an astonishing DVD, "CFS: Is Oxygen the Problem?" back around 2009 with some astonishing echocardiogram photos, though I keep wanting to shift his "are we toxic to oxygen" to read "is oxygen toxic to us?" which is what I think he means. Recent research seems to bear him out--we do not absorb oxygen into our cells as we should, it seems.

 

Yeah, probably because I’m french and the french word for non-existent is « inexistant ». Sorry sbout that!

Also when I look it up, they come up as synonyms.

 

@NelliePledge

Hi Nellie- I think yours is a good question. I am not fully clear on the implications of the various diagnoses.
I can tell you that at my first appointment with a cardiologist, I asked him whether I had Pots. He did a stand test for 3 minutes before saying 'no'. It should have been a full 10 minutes. On standing up at home, my hr was rising by about upper 20s bpm immediately. For a diagnosis of Pots I believe a rise of 30 bpm after 10 minutes is needed so I suspect I was about there.

He did however continue to examine me for other heart issues which is when the prolapse was diagnosed. It has been complicated since then and my attention has been focused there rather than OI issues but I believe I have OI. I cannot stand now, and in fact for several years before the heart diagnosis, I carried a light stool to sit on when I wasn't moving. I carried it everywhere because I felt ill on standing still. However the regurgitation won't be helping this either.