10 Celebrities with ME/CFS - by Erica Verrillo

[Chickadee9]

He may have had health care personnel making quiet visits as well.

Despite having no idea what I had and doing all of the wrong things, I nearly recovered in the first few months after the 'terrible flu'. Aggressive Rest Therapy and optimal nutrition might have got me through it (or not).

I too nearly recovered after a few months and then felt I must work to keep my job---and dug myself a deeper hole. That's how it seems in retrospect anyway.

 

[Chickadee9]

All I was saying was that, for SOME people, the ability to rest and not having the worries of work and money and daily living in the early stages of ME would, I believe, have helped them improve and possibly recover. As Bob says we are all different. I think research will find that there are many variants of ME. Interesting to see what Dr. Bateman is saying about 2 distinct sub-groups in her long clinical experience, even suggesting that one group has a better chance of recovery than the other.

 

[Gingergrrl]

I think research will find that there are many variants of ME. Interesting to see what Dr. Bateman is saying about 2 distinct sub-groups in her long clinical experience, even suggesting that one group has a better chance of recovery than the other.

@Chickadee9 What do you mean re: Dr. Bateman finding two sub-groups of people in which one has a better chance of recovery than the other? I am not familiar with her research findings though I have looked at her general website and considered seeing her (before I learned how long her waiting list was and found a specialist closer to me.) Any info you can provide would be great. Thanks!

 

[Soundthealarm21]

Didn't Cher go to a clinic in Germany for treatment?

What did she receive there? Antivirals?

 

[Bob]

@Gingergrrl43, Cort writes about Bateman in his recent blog. See towards the end under the sub heading "Two Subsets":
http://www.cortjohnson.org/blog/201...ng-chronic-fatigue-syndrome-dr-bateman-talks/

 

[Gingergrrl]

@Gingergrrl43, Cort writes about Bateman in his recent blog. See towards the end under the sub heading "Two Subsets":
http://www.cortjohnson.org/blog/201...ng-chronic-fatigue-syndrome-dr-bateman-talks/

@Bob Thank you for posting that link and I just read the entire article w/the speech by Lucinda Bateman. Her opinions of the disease process and two subsets are very interesting although I was not sure though where she got her information? Was it based on research studies or just her clinical opinion? I am not saying she is wrong but her theories are different than the ME/CFS specialist that I just saw.

She stated that ME/CFS is more of an autoimmune disease than viral and that seemed strange to me. She said that the first sub-group had a viral/infectious cause (which would be me) and that they also had POTS/cardiac type issues vs. neurological (which would also be me) but then she said they had, "Autoimmune antibodies to the receptors that control heart rate and blood pressure." This is an interesting theory but I have never heard it before and wonder where she got it. I definitely have autonomic dysfunction that I did not have prior to mono/EBV but have never heard it was due to an autoimmune cause and assumed it was a viral cause.

She also said that this first group tends to "Recover" but she did not say how or with what treatments? Does she prescribe anti-virals to this group (since she said they had a viral/infectious cause) or some other treatment? I know this thread was about celebs with CFS so I don't mean to de-rail the topic but this is of great interest to me as I know Dr. Bateman is a specialist in the field. Maybe this portion can be separated into a new thread?

 

[biophile]

@Gingergrrl43 just a quick comment. Autoimmunity is not inconsistent with a viral trigger. EBV may have triggered some sort of autoimmunity even if the illness is no longer being caused by the acute stages of EBV.

 

[WillowJ]

It's possible rest helped me get a reasonably good remission, in the early days, but it got worse again later. So not a recovery for me. (But I tried to manage as normal a lifestyle as possible and pushed myself to do this, and I got more infections and whatnot--still susceptible to whatever causes ME)

@Gingergrrl43 there is a new study indicating some cases of POTS, especially those associated to viral onset, might be autoimmune. from Vanderbilt.

Autoimmune theory is not an entirely new theory for ME/CFS, but all specialists have their own favorite theory. We haven't settled on one as being best yet.

 

[Gingergrrl]

@biophile and @WillowJ Thanks for the info and I know there are endless theories re: the causes of ME/CFS including autoimmunity from an initial viral trigger (which could be why I now also have Hashimoto's when I did not have it prior to mono/EBV.) I guess it could be why I have POTS type stuff too. What I am wondering (b/c I have not read all the studies) is, if a specialist like Dr. Bateman (and others) are more supporting the autoimmune theory, do they still treat the patient with anti-virals if their blood tests show high viral levels for things like EBV, HHV-6, etc?

 

[Chickadee9]

@Chickadee9 What do you mean re: Dr. Bateman finding two sub-groups of people in which one has a better chance of recovery than the other? I am not familiar with her research findings though I have looked at her general website and considered seeing her (before I learned how long her waiting list was and found a specialist closer to me.) Any info you can provide would be great. Thanks!

Have a look at Health Rising. They send out a daily email. It was in one of these in the last week or two. Cort Johnson interviewed her.

 

[Bob]

@Bob Thank you for posting that link and I just read the entire article w/the speech by Lucinda Bateman. Her opinions of the disease process and two subsets are very interesting although I was not sure though where she got her information? Was it based on research studies or just her clinical opinion? I am not saying she is wrong but her theories are different than the ME/CFS specialist that I just saw.

She stated that ME/CFS is more of an autoimmune disease than viral and that seemed strange to me. She said that the first sub-group had a viral/infectious cause (which would be me) and that they also had POTS/cardiac type issues vs. neurological (which would also be me) but then she said they had, "Autoimmune antibodies to the receptors that control heart rate and blood pressure." This is an interesting theory but I have never heard it before and wonder where she got it. I definitely have autonomic dysfunction that I did not have prior to mono/EBV but have never heard it was due to an autoimmune cause and assumed it was a viral cause.

She also said that this first group tends to "Recover" but she did not say how or with what treatments? Does she prescribe anti-virals to this group (since she said they had a viral/infectious cause) or some other treatment? I know this thread was about celebs with CFS so I don't mean to de-rail the topic but this is of great interest to me as I know Dr. Bateman is a specialist in the field. Maybe this portion can be separated into a new thread?

Hi, I think that Bateman's opinions re the two subsets are formed by her observations in her clinic. Her opinions re autoimmunity seem to come partly/mainly from her recent reading of the literature.

This post (in another thread) highlights two of the autoimmune research papers that Bateman refers to:
http://forums.phoenixrising.me/inde...ximab-trial-30-july.24499/page-47#post-484079

I'm not sure what Bateman's approach to treatment is, or what she considers leads to remission/recovery. I don't know if she prescribes antivirals. But I don't see why autoimmunity and increased viral titres should be mutually exclusive. I'm speculating here, but I would have thought that autoimmunity could disrupt the immune system which could, in turn, lead to the expression (failed suppression) of common viruses. Alternatively, failure to suppress common viruses (for whatever reason) could lead to autoimmunity.

Personally, over the past couple of years, I've been slowly coming round to the idea that ME may have an autoimmune basis that disrupts the immune system and possibly the mitochondria. This might explain why there are lots of different viruses associated with ME (but no single viral cause) and why antivirals have a limited therapeutic effect, and rarely lead to recovery.

If it's an autoimmune disorder leading to disruption of the immune system followed by activation of common viruses, then antivirals may perhaps help with some symptoms and complications caused by viral activation.

But this is all speculation.

 

[Gingergrrl]

Hi, I think that Bateman's opinions re the two subsets are formed by her observations in her clinic. Her opinions re autoimmunity seem to come partly/mainly from her recent reading of the literature.

This post (in another thread) highlights two of the autoimmune research papers that Bateman refers to:
http://forums.phoenixrising.me/inde...ximab-trial-30-july.24499/page-47#post-484079

I'm not sure what Bateman's approach to treatment is, or what she considers leads to remission/recovery. I don't know if she prescribes antivirals. But I don't see why autoimmunity and increased viral titres should be mutually exclusive. I'm speculating here, but I would have thought that autoimmunity could disrupt the immune system which could, in turn, lead to the expression (failed suppression) of common viruses. Alternatively, failure to suppress common viruses (for whatever reason) could lead to autoimmunity.

Personally, over the past couple of years, I've been slowly coming round to the idea that ME may have an autoimmune basis that disrupts the immune system and possibly the mitochondria. This might explain why there are lots of different viruses associated with ME (but no single viral cause) and why antivirals have a limited therapeutic effect, and rarely lead to recovery.

If it's an autoimmune disorder leading to disruption of the immune system followed by activation of common viruses, then antivirals may perhaps help with some symptoms and complications caused by viral activation.

But this is all speculation.

@Bob, Thanks for the info and additional link re: Dr. Bateman. I am not feeling as well today and having a harder time taking in the details but it makes sense that autoimmunity could be an issue/cause. I really don't know what to think at this point?!!

 

[JAH]

From Rich Carson today, James Garner, RIP

@RichCarsonsDeal: Actor James Garner passed away today, he and suffered from MECFS. Really? Yes, he told me himself. http://t.co/XS7frbdFh0

 

[Gingergrrl]

@JAH I looked at the link and googled him but it said he died of natural causes and couldn't find any reference to ME/CFS. I am not saying he didn't have it (and have no idea?!!) but just couldn't find anything.

 

[heapsreal]

Robin soderling a tennis player from Sweden was at the top of his game and one of the few players who was able to beat Rafael Nadal on clay where he is almost unbeatable, as well as wins over Federer and was ranked as high as 2 or 3 in the world.

That was a few years ago then he came down with mono. He still hasn't been able to return to tennis.

I don't think he was burnt out as he appeared to be enjoying beating the world's best and was at his peak although I still think he could have done even better if he hadn't been struck down with mono.

Reports I have seen on soderling never mention cfs or ME just that he never recovered from mono. I understand him not wanting to be associated with cfsme because of the stigma and only lazy rich yuppies get cfsme.

If he had read Phoenix rising after 6 months and jumped on antivirals and ampligen which he would be able to afford, I wonder if he would have gotten back to tennis. A recovery with avs or ampligen would have been good advocacy for cfsme.

 

[ukxmrv]

I think he may well have had ME but retreated to his estate in NZ and did nothing for a long time. A lot of us would recover/improve if we could do nothing in beautiful surrounds with everything done for us for as long as needed. So he was lucky he was able to do the right thing.

There are plenty of people in NZ with ME. There was an outbreak there in the 80's called the "Tapanui flu".

I took time out and went somewhere beautiful by the sea, relaxed and expected to improve. Didn't do anything for my ME symptoms. Yes, it is possible to get less PEM through less physical demands on us like cooking and cleaning but just relaxing in a beautiful place like NZ isn't enough.

Micheal Crawford said he was sailing in NZ. That would cause terrible PEM to me.

 

[me/cfs 27931]

Robin soderling a tennis player from Sweden was at the top of his game and one of the few players who was able to beat Rafael Nadal on clay where he is almost unbeatable, as well as wins over Federer and was ranked as high as 2 or 3 in the world.

That was a few years ago then he came down with mono. He still hasn't been able to return to tennis.

I just saw this interview/retrospective on Robin Soderling on Tennis Channel. It mentions mono and "He retired early from professional tennis in 2015 due to health concerns."

 

[*GG*]

Similar idea here, but for Fibromyalgia.

GG

https://www.verywell.com/celebritie...m_source=cn_nl&utm_content=10977965&utm_term=

 

[Hell...Hath...No...Fury..]

I must be getting old or been dropped off the planet for too long as i've only heard of two of them

 

[Gingergrrl]

@Chickadee9 What do you mean re: Dr. Bateman finding two sub-groups of people in which one has a better chance of recovery than the other?

I am quoting myself because I just re-discovered this thread (from over three years ago!) in which we were discussing Dr. Bateman's theory re: two sub-groups and their chances of recovery. I did not understand it at the time, and had no idea that I would ultimately fall into the autoimmune sub-group that she described.

@Gingergrrl43, Cort writes about Bateman in his recent blog. See towards the end under the sub heading "Two Subsets":
http://www.cortjohnson.org/blog/201...ng-chronic-fatigue-syndrome-dr-bateman-talks/

I just re-read this article, especially the end part re: the two sub-groups and wish @Bob was here so I could thank him for posting the link for me three years ago! (I removed the "43" from my avatar back at that time, in case anyone is confused).

@Gingergrrl43 just a quick comment. Autoimmunity is not inconsistent with a viral trigger. EBV may have triggered some sort of autoimmunity even if the illness is no longer being caused by the acute stages of EBV.

I actually agree with this and understand it now (even though I did not at that time). I had severe mono from EBV which re-activated ten months later and within two weeks of that, I developed POTS with my HR going into the 160's and 170's (at that time).

Below is the quote from Dr. Bateman from the article and I bolded all of the parts that match with my experience. I wish I knew what Dr. Bateman thinks about using high dose IVIG and/or Rituximab for her patients in this sub-group? Does anyone happen to know?

An infectious onset group that develops autoimmune antibodies to the receptors that control the heart rate and blood pressure; i.e., the POTS patients.

Autoimmune processes appear to stop many POTS patients from being able to stand without symptoms

She sees this a lot in kids. This group doesn’t have a lot of cognitive issues; instead they have problems standing, sleeping, anxiety from excess epinephrine (a.k.a. adrenaline), are deconditioned (because they have trouble standing), and are in pain due to stress and disturbed sleep. The work on this group, she thinks, is going to go fast, and that group tends to get better anyway. They’re clearly easier to treat right now.

She talked about one young man whose mother has ME/CFS and who developed full-blown POTS after coming down with West Nile Virus. By compensating for his POTS (he wears full-length body stockings) he’s able to work and even exercise. He’s no longer deconditioned and his depression and brain fog have disappeared.

It’s not perfect – he has to pace himself – but he’s highly functional, and it’s all from treating the symptoms of his POTS.

His POTS is by no means resolved! It’s likely as bad at it ever was, but ways have been found to compensate for it. He’s being kept functional by the medical profession. With the autoimmunity work going on it’s possible that his POTS will be solved.