Washington Post: With his son terribly ill, a top scientist takes on CFS

[Countrygirl]

Thanks @Never Give Up . I have tried to post the link, but I have computer problems this morning. I tried repeatedly to reply to @Sasha , but either my posts won't upload or I cannot access web sites. I hope this will post.

 

[Countrygirl]

My hope is that we can become so ill and profoundly weak with this disease that it can truly feel that we are dying, but we still survive somehow and I trust this will be so for Whitney. I recall horrible times in the past when I was very severely ill and believed I could not possibly survive the day, yet, amazingly, I did. I just hope and pray that Whitney is 'merely' passing through this same experience and will remain with us.

It is just so heartbreaking for his poor family who are witnessing this. They will be very much in my thoughts today.

 

[taniaaust1]

@Rose49 and family

Keep your hopes up for your son as though he currently does feel like he's dying and believing this, there is a very good chance he wont.

I say this as I was severely sick, bedbound in a horrific state like I'm hearing your son is in for 8mths (my child was looking after me, I couldn't walk to a toilet most of that time, couldn't even often crawl or even drag myself there). I was to the point not only often couldn't I speak (I was using very basic hand signs for things like I needed food/drink), nor handle light, nor handle moment or sound.

I was also experiencing being completely paralysed at times where I couldn't even move a finger and at times sleeping up to 5 days at a time in like a comatose state without waking up (so not even waking up to eat/drink etc, I couldn't eat a full meal anyway due to the effort involved to chew, I'd take a few bites and then loose consciousness again. I was so weak I often couldn't hold my head up and couldn't sit properly. My pain level was indescribable. I believed I was dying due to my state and in the end actually came to terms with that).

I did actually recover over time (a long time) from being that bad and actually went to have like a full remission for several years before I caught an every day virus and got sick again (I use a wheelchair to go out) but never as bad as I was previously.

No matter how bad your son gets with this, there is hope he will improve in future. I just wanted to let you know that some of us do get that bad but do improve still. I do not know how I survived that sick. This illness can get so dreadful and scary, I wish your family and your son the best.

Thank you to your family for sharing your story with the media.

 

[Gingergrrl]

Thanks @Never Give Up . I have tried to post the link, but I have computer problems this morning. I tried repeatedly to reply to @Sasha , but either my posts won't upload or I cannot access web sites. I hope this will post.

I got the message in one of the e-mails from OMF but am not sure how to post the link right now and leaving soon for an appt. Will try later this evening if no one else has done it by then.

 

[Sasha]

I got the message in one of the e-mails from OMF but am not sure how to post the link right now and leaving soon for an appt. Will try later this evening if no one else has done it by then.

@nevergiveup kindly posted their FB link and the specific post is here:

https://www.facebook.com/cfsresearc...0143697057423/973567226048400/?type=3&theater

 

[Gingergrrl]

@nevergiveup kindly posted their FB link and the specific post is here:

https://www.facebook.com/cfsresearc...0143697057423/973567226048400/?type=3&theater

Oops, sorry I missed that!

 

[halcyon]

My hope is that we can become so ill and profoundly weak with this disease that it can truly feel that we are dying, but we still survive somehow and I trust this will be so for Whitney.

I don't believe the disease process itself is fatal, but the limitations it places in the severe cases on adequate nutrition and water intake are what make it fatal. For example, Sophia Mirza didn't die of ME, she died of acute renal failure due to chronic dehydration.

As Dr. Davis mentioned they need to get a feeding tube in him. How do you transport and expose a severe ME patient to a hospital and surgery, knowing that it will make an already severe situation worse, with the only alternative being him starving to death. What a horrible choice to have to make.

 

[Effi]

I don't believe the disease process itself is fatal, but the limitations it places in the severe cases on adequate nutrition and water intake are what make it fatal. For example, Sophia Mirza didn't die of ME, she died of acute renal failure due to chronic dehydration.

As Dr. Davis mentioned they need to get a feeding tube in him. How do you transport and expose a severe ME patient to a hospital and surgery, knowing that it will make an already severe situation worse, with the only alternative being him starving to death. What a horrible choice to have to make.

I've been thinking about whitney and others patients like him a lot since I read this new message. I was thinking the same thing as you @halcyon , that it is not death by ME but death by starvation, dehydration, ... It is inhumane. It is so heartbreaking for carers to have to watch their loved one whither away and feel totally helpless...

 

[adreno]

I was thinking the same thing as you @halcyon , that it is not death by ME but death by starvation, dehydration, ... It is inhumane.

The initial cause is still the ME. Similarly, AIDS won't kill you directly, but make you susceptible to die from pneumonia for example. Still, we usually attribute the cause of death to AIDS, not pneumonia.

 

[maryb]

Whitney has extremely low levels of several small molecules associated with energy metabolism. He also has three mutations in a gene that codes for an enzyme that helps convert folate and vitamin B12 to their active forms, a process necessary for both metabolic and immune function.

Such mutations are present in about 5 to 10 percent of the general population, but Kogelnik has been finding them at much higher rates among his ME/CFS patients. "

A bit late to come into this thread but interesting as I had a general health check up recently, at the time I was feeling terrible and doubted I could get there, part of the results were that my folate and B12 levels were through the roof, despite my having not supplemented them for at least 12 months....it would make sense to me that they were just sitting not being converted, and why doctors such as Dr M and KdM prescribe B12 injections. Oh and also why useless general GPs who haven't a clue would poo poo these.

 

[Helen]

A bit late to come into this thread but interesting as I had a general health check up recently, at the time I was feeling terrible and doubted I could get there, part of the results were that my folate and B12 levels were through the roof, despite my having not supplemented them for at least 12 months....it would make sense to me that they were just sitting not being converted, and why doctors such as Dr M and KdM prescribe B12 injections. Oh and also why useless general GPs who haven't a clue would poo poo these.

Yes, today only the most experienced doctors in this field know that the test results might not be reliable. I was lucky to get to know some of them many years ago. They all advocated a trial of B12 injections and luckily it was of great help. Then some doctors think there is only a deficiency, when it in fact may be a lifelong dependency.

It would be very interesting to know what SNP´s Prof. Davies´ found worth noting. Maryb, let´s take a look again at the one´s you had tested in the B12 and folate metabolism.

Most of all I wish they soon will find a treatment for Ron Davie´s son and all other PWME.

 

[alex3619]

I don't believe the disease process itself is fatal, but the limitations it places in the severe cases on adequate nutrition and water intake are what make it fatal.

I don't think this is the full story. I think the capacity to adapt, or maintain repair and other mechanisms, is very compromised. So a minor medical issue can be come a life threatening crisis. Other symptoms, including OI, can be fatal, just rarely. So a minor infection or a kidney stone or something can be fatal. Similar issues occur with the elderly. An old person might die of even a relatively innocuous flu strain.

So managing or minimizing the impact of things is very important.

On recovery, I think Nigel Speight has tracked many patients over time. Even the very severe have a good chance of partial or full recovery, and the younger patients do better than the older ones over time.

People get worse, people improve. Getting through the bad times, holding on, leads most of us to periods of fewer symptoms. Full recovery is rare, but reductions in symptoms or temporary remission is not rare.

 

[alex3619]

AIDS won't kill you directly, but make you susceptible to die from pneumonia for example. Still, we usually attribute the cause of death to AIDS, not pneumonia.

Quite right. AIDS never killed anyone that we know for certain. Yet the secondary consequences are nearly always fatal if untreated. This is one of the reasons why some coroners list multiple causes of death. There is the proximate cause, the thing leading to death, and the other causes, the things that contributed to the proximate cause.

Yet because ME or CFS are rarely cited as a cause of death, and because its rarely discussed in the literature, doctors rarely think of it that way. I also think that because many doctors see patients misdiagnosed with CFS, or think its the same as self-limiting viral fatigue, or never see the more severe, mostly just mild cases, they get experiential bias in how they see ME or CFS.

 

[sarah darwins]

Yet because ME or CFS are rarely cited as a cause of death, and because its rarely discussed in the literature, doctors rarely think of it that way.

As you say, Alex. This is underlined in the rather good article linked in this thread: http://forums.phoenixrising.me/inde...al-answers-to-chronic-fatigue-syndrome.42167/

From the final section of the article:

Only one in three medical schools include ME/CFS information in their curriculum and only 40% of medical textbooks include material related to the disease, according to the IOM.

The IOM report recommended that ME/CFS be included on medical licensure exams, and that workshops be sponsored at major medical conferences focused on the condition. It also urged collaboration with large healthcare systems.

"To me, the biggest need in the field is for all doctors to be trained about this illness and to fold it into what they do everyday," Bateman said.

- link to article

 

[maryb]

It would be very interesting to know what SNP´s Prof. Davies´ found worth noting. Maryb, let´s take a look again at the one´s you had tested in the B12 and folate metabolism.

Most of all I wish they soon will find a treatment for Ron Davie´s son and all other PWME.

I too hope and pray for a treatment to benefit everyone, especially the young ones who've been denied of so many things.When I think of them it unfortunately makes me very angry, and I'm not normally a person who carries a lot of anger.

Which SNPs do I need to look at @Helen, can you help?

 

[Helen]

Which SNPs do I need to look at @Helen, can you help?

I´ll PM you as this is off topic of this thread.

 

[K22]

I don't think this is the full story. I think the capacity to adapt, or maintain repair and other mechanisms, is very compromised. So a minor medical issue can be come a life threatening crisis. Other symptoms, including OI, can be fatal, just rarely. So a minor infection or a kidney stone or something can be fatal. Similar issues occur with the elderly. An old person might die of even a relatively innocuous flu strain.

So managing or minimizing the impact of things is very important.

On recovery, I think Nigel Speight has tracked many patients over time. Even the very severe have a good chance of partial or full recovery, and the younger patients do better than the older ones over time.

People get worse, people improve. Getting through the bad times, holding on, leads most of us to periods of fewer symptoms. Full recovery is rare, but reductions in symptoms or temporary remission is not rare.

Dr Speight, I think, has mainly worked with kids, who we know are much more likely to Recover generally. They aLso possibly deteriorate quickly as they're kids, eliminating harmful repeated exertion; are more likely escape from the harmful psychobabble & then can get cocooned by caring parents. Adults on the other hand are more likely to be pushed or feel they must carry on looking after the kids or aging mother etc & spend years mismanaging as Drs diagnose conversion disorder etc, so the harm they accrue affects chances of their recovery more.

My experience of adult severe ME is that those who go down quickly to even very severe can often rebound, even recover in a few years, whereas those who wind up severe after years deteriorating, pushing, not diagnosed or after bad GET are much more entrenched and even if they do improve its mainly just by a grade. People I know of who've died/been at risk of death it is because of inability to have adequate water/nutrition, serious infection, septicaemia & blood clots etc - all direct consequences of being so debilitated/immobile with ME.

 

[Roy S]

https://twitter.com/i/web/status/685277742397403137

 

[Gingergrrl]

@Roy S Thank you for posting that picture which made me very happy to see. I am so glad that Whitney knows how many supporters he has and that he could enjoy a brief moment with his beautiful mom.

It is interesting re: the Ativan and this is wild speculation but does he have a mast cell disease? Besides the more traditional uses for benzos (insomnia, anxiety) they also help in MCAS b/c there are benzo receptors on the mast cells. Some one much more scientific than me could explain it but I just wondered if this was a possibility? When my MCAS was at it's worst, we added Klonipin to my mast cell regime which I no longer need but it did help at the time.

ETA: Was also curious b/c of the intolerance of food issues but I know there could be a million other causes.

Regardless of that, it is wonderful to see the picture!!!

 

[dannybex]

Yes, thanks @Roy S for posting that update. Very heartening indeed.

Do you or anyone know if they were able to get him to the hospital to get the feeding tube inserted? For some reason he doesn't seem as emaciated as in past photos, plus just the fact that he's sitting up is huge.