Living on Empty: Newspaper Story Highlights Whitney Dafoe's Severe ME/CFS

[Valentijn]

The key point here is the Autonomic Nervous System. Its affect on every function of every organ of the body. If that has gone somewhat off balance ----- then the question is WHY?

The problem is that ME/CFS is much more complicated than "just" involving the ANS. It involves the immune system, the brain, the muscles, etc. Autonomic dysfunction is insufficient to explain brain abnormalities on MRI, or painfully swollen lymph nodes after trivial exertion, or inability of the muscles to appropriately utilize energy on demand.

Anytime someone does come up with an attempt to trace these all back to the ANS, the CNS/brain, or pretty much anything else, it involves a lot of vague hypotheses with little practical explanation for the actual mechanisms involved. And expert ME/CFS researchers have been putting a lot of thought and research into these issues. Thus far, the immune system is looking like more of an ultimate culprit, and that can be very tricky to treat even when doctors know exactly what is going wrong with it - and they don't yet, for ME/CFS.

To be a little more frank, we badly need fixing, but suggestions from the internet are not going to do it. Other experienced ME/CFS patients can often offer helpful suggestions regarding symptom management, and some doctors can try various treatments and at least treat us with respect. But for very severe patients, the only real option is to lie there and try to survive while waiting for the science to catch up with the disease. Compassion helps, and advocacy with the NIH or CDC, as does spreading awareness to the general public. But second-guessing the decisions made by a patient or their carers is not productive, even when done with the very best of intentions.

 

[Carole]

The problem is that ME/CFS is much more complicated than "just" involving the ANS. It involves the immune system, the brain, the muscles, etc. Autonomic dysfunction is insufficient to explain brain abnormalities on MRI, or painfully swollen lymph nodes after trivial exertion, or inability of the muscles to appropriately utilize energy on demand.

Anytime someone does come up with an attempt to trace these all back to the ANS, the CNS/brain, or pretty much anything else, it involves a lot of vague hypotheses with little practical explanation for the actual mechanisms involved. And expert ME/CFS researchers have been putting a lot of thought and research into these issues. Thus far, the immune system is looking like more of an ultimate culprit, and that can be very tricky to treat even when doctors know exactly what is going wrong with it - and they don't yet, for ME/CFS.

To be a little more frank, we badly need fixing, but suggestions from the internet are not going to do it. Other experienced ME/CFS patients can often offer helpful suggestions regarding symptom management, and some doctors can try various treatments and at least treat us with respect. But for very severe patients, the only real option is to lie there and try to survive while waiting for the science to catch up with the disease. Compassion helps, and advocacy with the NIH or CDC, as does spreading awareness to the general public. But second-guessing the decisions made by a patient or their carers is not productive, even when done with the very best of intentions.

Valentijn--
And you are the AUTHORITY ON WHAT?????

Carole

 

[Zach]

To be a little more frank, we badly need fixing, but suggestions from the internet are not going to do it. Other experienced ME/CFS patients can often offer helpful suggestions regarding symptom management, and some doctors can try various treatments and at least treat us with respect. But for very severe patients, the only real option is to lie there and try to survive while waiting for the science to catch up with the disease. Compassion helps, and advocacy with the NIH or CDC, as does spreading awareness to the general public. But second-guessing the decisions made by a patient or their carers is not productive, even when done with the very best of intentions.

I very much agree with Valentijn's comments. Especially the above comment. Making comments from the sidelines about someone else's care, and second-guessing the care-givers, although done with the best of intentions, can be unhelpful, demoralising, and even harmful for the care-givers and/or patient. The care-givers are the experts. And in this case they are clearly doing a supreme and utterly admirable job. I can only watch in awe at the level of their care, dedication and expertise.

I admire patients who are persistent about seeking treatments or alternative diagnoses that help them. Most of us have experimented with supplements and pharmaceuticals, and some patients have found some things that help them. But the sad fact is that there is no treatment for ME, and most of us are in the same situation - we have not found a successful treatment, and we are waiting for the science to catch up. Some of us have found things that help relieve symptoms, or that have helped to stabilise the illness. And some of us have found an appropriate alternative diagnosis, such as Lyme. But the vast majority of us, who use these forums, are still ill, and have found nothing to return our health to pre-illness levels. Severely affected patients cannot afford to experiment with a vast range of supplements etc., because their bodies can't tolerate them. It could be severely counter-productive to experiment with a random supplement or drug, because someone on the internet says that it helped them. (For example, I have reacted negatively to almost every supplement that has been recommended to me, including a disastrous reaction to some probiotics, which has left me bed-bound.)

Perhaps the best care for ME patients is compassion and rest. And Whitney is obviously getting plenty of that.

 

[Valentijn]

Valentijn--
And you are the AUTHORITY ON WHAT?????

No need to shout. I'm an authority on being an ME patient. In addition to having had it for four years (quite a short time compared to some), I read pretty much all of the relevant research, and engage in critical discussions of that research on a regular basis. I hope you can respect that ME/CFS patients do know more about their disease than you know about our disease. That is not meant to be an insult, but rather an expected result of having the disease.

I hope you are not offended to have someone correct your misconceptions about a disease. As stated in the above post, I do believe your recommendations were made with the best of intentions, but it can make patients and their carers feel misunderstood and criticized when impractical or irrelevant recommendations are made. If you want to know (a lot) more about ME/CFS, I recommend the Canadian Consensus Criteria (CCC), the International Consensus Criteria (ICC), and the recent report by the Institute of Medicine (IOM). We can certainly use all of the understanding we can get

CCC: http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf
ICC: http://fondationsommeil.com/wp-cont...International-Consensus-Primer-with-cover.pdf
IOM: http://iom.nationalacademies.org/reports/2015/me-cfs.aspx

 

[Carole]

No need to shout. I'm an authority on being an ME patient. In addition to having had it for four years (quite a short time compared to some), I read pretty much all of the relevant research, and engage in critical discussions of that research on a regular basis. I hope you can respect that ME/CFS patients do know more about their disease than you know about our disease. That is not meant to be an insult, but rather an expected result of having the disease.

I hope you are not offended to have someone correct your misconceptions about a disease. As stated in the above post, I do believe your recommendations were made with the best of intentions, but it can make patients and their carers feel misunderstood and criticized when impractical or irrelevant recommendations are made. If you want to know (a lot) more about ME/CFS, I recommend the Canadian Consensus Criteria (CCC), the International Consensus Criteria (ICC), and the recent report by the Institute of Medicine (IOM). We can certainly use all of the understanding we can get

CCC: http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf
ICC: http://fondationsommeil.com/wp-cont...International-Consensus-Primer-with-cover.pdf
IOM: http://iom.nationalacademies.org/reports/2015/me-cfs.aspx

Valentijn- I have had the disease ME/CFS since 1987. Please don't dictate to me what you assume the caregivers feel .
I do not consider any of the recommendations that anyone has made on this subject as irrelevant or impractical. Nor do you have the authority to tell anyone what they should and shouldn't post..
NO ONE REALLY KNOWS YET WHAT WHITNEY HAS.

Carole

 

[Valentijn]

Valentijn- I have had the disease ME/CFS since 1987. Please don't dictate to me what you assume the caregivers feel .
I do not consider any of the recommendations that anyone has made on this subject as irrelevant or impractical. Nor do you have the authority to tell anyone what they should and shouldn't post..
NO ONE REALLY KNOWS YET WHAT WHITNEY HAS.

He has ME/CFS symptoms and an ME/CFS diagnosis. That seems to be the opinion of himself, his carers, and his doctors. I'm not sure why you are so intent on disputing it.

I find it quite odd that a long-term patient would not understand that a very severe patient cannot realistically be moved for treatment. Nor do I understand how anyone accompanied to dealing with doctors in relation to this disease would think that the CDC is at all willing or equipped to help him. It shows a rather baffling lack of understanding of both the disease and the politics around it.

 

[Zach]

NO ONE REALLY KNOWS YET WHAT WHITNEY HAS.

I must have missed something because, from everything i've read, there doesn't seem to be any doubt, from Whitney, his care-givers, and his doctors, that Whitney has a very severe case of ME/CFS. All over the internet, I've only seen very positive comments about the dedicated care that Whitney is receiving, and a deep sense of gratitude to the whole family that they are taking such amazing care of Whitney, raising awareness for this illness, and dedicating their lives (in the case of Ron Davis) to researching it.

 

[Carole]

He has ME/CFS symptoms and an ME/CFS diagnosis. That seems to be the opinion of himself, his carers, and his doctors. I'm not sure why you are so intent on disputing it.

I find it quite odd that a long-term patient would not understand that a very severe patient cannot realistically be moved for treatment. Nor do I understand how anyone accompanied to dealing with doctors in relation to this disease would think that the CDC is at all willing or equipped to help him. It shows a rather baffling lack of understanding of both the disease and the politics around it.

Guess you will just have to remain BAFFLED!!!!

Carole

I must have missed something because, from everything i've read, there doesn't seem to be any doubt, from Whitney, his care-givers, and his doctors, that Whitney has a very severe case of ME/CFS. All over the internet, I've only seen very positive comments about the dedicated care that Whitney is receiving, and a deep sense of gratitude to the whole family that they are taking such amazing care of Whitney, r
aising awareness for this illness, and dedicating their lives (in the case of Ron Davis) to researching it.

 

[Cort]

Guess you will just have to remain BAFFLED!!!!

Carole

That just gave me a good laugh!

Thanks

 

[Cort]

The problem is that ME/CFS is much more complicated than "just" involving the ANS. It involves the immune system, the brain, the muscles, etc. Autonomic dysfunction is insufficient to explain brain abnormalities on MRI, or painfully swollen lymph nodes after trivial exertion, or inability of the muscles to appropriately utilize energy on demand.

Anytime someone does come up with an attempt to trace these all back to the ANS, the CNS/brain, or pretty much anything else, it involves a lot of vague hypotheses with little practical explanation for the actual mechanisms involved. And expert ME/CFS researchers have been putting a lot of thought and research into these issues. Thus far, the immune system is looking like more of an ultimate culprit, and that can be very tricky to treat even when doctors know exactly what is going wrong with it - and they don't yet, for ME/CFS.

To be a little more frank, we badly need fixing, but suggestions from the internet are not going to do it. Other experienced ME/CFS patients can often offer helpful suggestions regarding symptom management, and some doctors can try various treatments and at least treat us with respect. But for very severe patients, the only real option is to lie there and try to survive while waiting for the science to catch up with the disease. Compassion helps, and advocacy with the NIH or CDC, as does spreading awareness to the general public. But second-guessing the decisions made by a patient or their carers is not productive, even when done with the very best of intentions.

I'm afraid I must agree with Valentijn. It is more than the ANS. The immune system must be involved. I would find amazing, actually, if the severely ill didn't have pathogen problems - and the science is just not up to it. The tests to uncover the problems are either not there or are not known. Some severely ill people like Mike Dessin do stumble on something and get well but they are rare and there are no formulas.

What they and we really need is lots of basic research - which is why the Severely Ill study by End ME/CFS is so intriguing. It's taking a very comprehensive look at these patients. It's "going where no man (or woman) has gone before"...In some ways I think its the most exciting research study ever.

It could find things that otherwise would takes years or even decades to find.

 

[Cort]

Valentijn--
And you are the AUTHORITY ON WHAT?????

Carole

Carole is showing her oats! Valentijn has been studying this disease for quite awhile! He is a patient like everyone else but he is very informed. Two good laughs today....Somehow that just cracked me up as well.

Thanks again Carole.

 

[Issie]

I'm afraid I must agree with Valentijn. It is more than the ANS. The immune system must be involved. I would find amazing, actually, if the severely ill didn't have pathogen problems - and the science is just not up to it. The tests to uncover the problems are either not there or are not known. Some severely ill people like Mike Dessin do stumble on something and get well but they are rare and there are no formulas.

What they and we really need is lots of basic research - which is why the Severely Ill study by End ME/CFS is so intriguing. It's taking a very comprehensive look at these patients. It's "going where no man (or woman) has gone before"...In some ways I think its the most exciting research study ever.

It could find things that otherwise would takes years or even decades to find.

I think the bottom line is AUTOIMMUNE. All the other things are symptoms and compensatory responses. Get the autoimmune system and inflammation in order and that's the best we can do.

Issie

 

[Issie]

Hoping Whitney and his family peace and comfort!!!!

Never ceases to amaze me how others will flat out "attack" those with a different opinion or take on a subject. It takes those looking in other directions to form new and maybe better directions to go. Have the old ones worked? Nope.

It takes an open mind and a challenge to what is thought to be today's fact. To come up with what will be tomorrow's persumed fact. I've learned myself, with the years I've studied, that there is nothing for certain. It's all based on knowledge at the time of statement. I may had been 100% certain I knew and understood something. And with more knowledge - looking back - I only had it partially correct. Someone may have told me something but I didn't understand what they were saying until I had another piece of knowledge that I didn't have at that time. When the light bulb comes on - and you get it.......you may regret your stance. Humbleness people. Hopefully we all will get it one day.

Hoping for all of your journeys to be enlightening and your hearts to find peace.

Issie

 

[Valentijn]

I think the bottom line is AUTOIMMUNE. All the other things are symptoms and compensatory responses.

Definitely one of the more likely options, given that we can have remissions and that there is such a large gender disparity. But other culprits might be chronic infection, or some weird new form of immune dysfunction which we don't even have a framework to comprehend yet. One problem with treating for presumed autoimmunity, when the specific cause of ME/CFS is not yet clear, is that the treatments aimed at doing that in a non-targeted manner are basically suppressing the immune system. That can be dangerous if the cause is actual infectious, or if it is featuring both infectious and autoimmune components, as it could allow infections to run wild when the immune system is deliberately surpressed.

And then there's the issue of figuring out if everyone has the same disease. Do 67% of ME patients have a strictly autoimmune disorder, while the other 33% have a primary or secondary chronic infection? Is there a different cause or additional infective component in severe patients versus mild? We need answers, research, funding

 

[Carole]

I think the bottom line is AUTOIMMUNE. All the other things are symptoms and compensatory responses. Get the autoimmune system and inflammation in order and that's the best we can do.

Issie

This is why in most cases- Immune Globulin works. The Im shots that I started in 87 pulled me out of the darkness in 3 weeks. However I did have to continue them.

It worked better than anything else for me-other than the B-12.

Thanks Issie for your input and your OPEN MIND!!!

Carole

 

[andreamarie]

I am so sorry that Whitney has such a severe form of M.E. I thank his family for sharing his story and send them buckets of love for all they face daily.

What I am getting from some comments on here is not perhaps appreciating how very severe M.E and its symptoms means travel to a doctors could either kill the person or plunge them into even more intense deterioration that would make life beyond tolerable if that was even possible with a case as severe as Whitney's. Due to this and as Whitney's mum says considering even travelling by ambulance to see a doctor when there are no guarantees the treatment will help is an extremely difficult decision to make.

Autonomic dysfunction is undoubtedly involved in severe M.E (why does it have to be automatically considered as something else other than part of very severe m.e, perhaps it is, perhaps it's not) and I would have thought but I don't know as I am not involved Whitney's current doctors would be looking at autonomic dysfunction as he is seeing some of the few experienced M.E doctors out there. I imagine that Whitney lies flat not only due to orthostatic intolerance but also to being ghastly ill, intolerably weak with acute sensory overload.

My heart goes out to Whitney and all very severe M.E sufferers, it's a hellish existence with no clear answers

 

[andreamarie]

Newspaper articles rarely, if ever, give all the information re a story like this. I know, because for ten years I worked for the Crohn's and Colitis Foundation and tried to place articles in the media. This was before the internet. Space was an issue and often large chunks of an article were edited out.

Considering how sophisticated medically the father is, I am sure many, many things have been tried. And in the beginning he was able to see doctors in their offices. I doubt things like P.O.T.S. were ignored.

My heart goes out to this family; what devoted caretakers they must be.

 

[tatt]

I thought I was going to be bed bound at one stage after I had to spend several days in bed and was housebound for months - I'm no longer housebound. I understand the fear of making things worse but I had so liitle life I was willing to risk a lt of experiments because I felt had nothing to lose and I didnt care if the attempt to improve killed me. Now I'm a lot better, in Rhodes I even walked up hills. Even in Rhodes I had to pace activity, but at a far hgher level than I can manage at home. It should be witney's choice if they risk experiments but those who experiment can experience significant improvement even if the underlying issue remains. I do think that the family may not have considered silent reflux as one of the problems - it's under-diagnosed and it has a significant impact on sleep quality. I'd also like to know Witney's vitamin D status.

Carole I take omeprazole when the reflux is really bad - and with a problem that essentially occurs when you are asleep it can be difficult to spot that. Although to take it in the morning it works better for me taken about 6-- 8p.m. Waking in the middle of the night (ring any bells?) was attributed by my gp to depression but taking omeprazole stopped that. My teeth in the morning can feel a little rough and I can sound hoarse, all symptoms that reflux is present. It was only diagnosed for me when I lost my voice.

I very rarely eat within 4 hours of bedtime and I rarely drink alcohol, also said to make reflux worse.

Lately I have begun to wonder if it sinus problems that worsen the nighttime refux, rather than the reflux causing the sinus problems. They often occur arond the same time, the reflux usually isnt obvious until after the sinus pain. So I've also tried antihistamine and ibuprofen, nasal sprays have made things worse in the past so I avoid them.

 

[Carole]

I thought I was going to be bed bound at one stage after I had to spend several days in bed and was housebound for months - I'm no longer housebound. I understand the fear of making things worse but I had so liitle life I was willing to risk a lt of experiments because I felt had nothing to lose and I didnt care if the attempt to improve killed me. Now I'm a lot better, in Rhodes I even walked up hills. Even in Rhodes I had to pace activity, but at a far hgher level than I can manage at home. It should be witney's choice if they risk experiments but those who experiment can experience significant improvement even if the underlying issue remains. I do think that the family may not have considered silent reflux as one of the problems - it's under-diagnosed and it has a significant impact on sleep quality. I'd also like to know Witney's vitamin D status.


Carole I take omeprazole when the reflux is really bad - and with a problem that essentially occurs when you are asleep it can be difficult to spot that. Although to take it in the morning it works better for me taken about 6-- 8p.m. Waking in the middle of the night (ring any bells?) was attributed by my gp to depression but taking omeprazole stopped that. My teeth in the morning can feel a little rough and I can sound hoarse, all symptoms that reflux is present. It was only diagnosed for me when I lost my voice.

I very rarely eat within 4 hours of bedtime and I rarely drink alcohol, also said to make reflux worse.

Lately I have begun to wonder if it sinus problems that worsen the nighttime refux, rather than the reflux causing the sinus problems. They often occur arond the same time, the reflux usually isnt obvious until after the sinus pain. So I've also tried antihistamine and ibuprofen, nasal sprays have made things worse in the past so I avoid them.

Tatt
My sleep specialist did say the reflux I have was contributing to the gasping. I am taking a Zantac in the am and Pepcid at night but still have to use my Cpap. I cannot take any NSAIDS as I have SIBO.
Interesting about the reflux and the sinus issues or vice versa. Will certainly consider the Omeprazole. What is the Brand name? I never eat 3-4 hours before bed and also elevate the head at night.



Thank you so much. Have to consider everything-all the time. As nothing stays the same.

Carole

 

[tatt]

Carole in the uk doctors presecribe by generic name, it's a NHS requirement. In America it would be Prilosec, Zegerid or Omesec according to google. I think lansoprazole
is considered to be better but not enough so to justify the extra cost (in the uk). It's Novartis in America.