Klimas Conference Video 3: Voices of Hope

March 11, 2013

Jody Smith continues her review of Nova’s Patient Conference for Dr Klimas with a look at three patients who have improved significantly.

pixabay-silhouettes-people-gears-2“No one has ever taught me more about what to do than my patients.” So said Dr. Nancy Klimas at the Patient Conference hosted by Nova Southeastern University on January 26, 2013.

This has to be one of the greatest things any professional associated with ME/CFS has ever said. It may be one of the main reasons that Dr. Klimas is so successful and so trusted in our community. She went on to talk about the importance of listening — another reason she is so highly regarded by those of us with ME/CFS.

Sometimes, Dr. Klimas said, she is helpful but sometimes patients find their own way. The third video from the conference highlighted three people who were not necessarily completely recovered from ME/CFS, but who were significantly improved.

The guests were Gail Hawks, a retired professor of Economics from Miami Dade College, Sue Cunningham, captain for American Airlines, currently on long term disability, and Dan Moricoli (“I run a couple of websites” about this disease), a retired advertising executive currently a television producer.

What helped them improve? If they’ve relapsed, what caused them to slip?

Gail Hawks

Gail Hawks said that she is 67 yrs old. When she was 60 she attributed her fatigue, and her tendency to get sick easily and to recover slowly, to getting older. But eventually she realized that this just didn’t match up with her personality. It dawned on her that something was wrong with her. Getting over a cold took forever, and often came with laryngitis, a problem for a professor.

About two years ago she went to her doctor who told her that she was showing signs of chronic fatigue. Bloodwork revealed she had “almost no immune system”. This explained why she would get sick often, and take a long time to recuperate.

She began to take supplements like omega-3 and vitamin C among others. She’d never taken vitamins or supplements before and now had to take a number of them twice a day. Her cognitive dysfunction required her to make a chart to keep track of them.

After about four months she began to feel better. She didn’t feel the need to nap all the time, “to hide in my office and maybe take a snooze before my next class”. She started to feel like she had a bit of energy. After a year, she was feeling very good, and thought she was cured. She figured she didn’t need supplements anymore and stopped taking them. Within weeks, old symptoms began to return. She saw her mistake and resumed her supplements, and began to improve once more.

She said that now, at the beginning of her third year, she feels much better, and is able to think again. Being retired, she no longer needs to balance things with school. She can enjoy reading and learning once again, and enjoy family vacations. “I can live like I want to live. Even being 67.”

Sue Cunningham

Sue Cunningham said that she has been sick since 2007. She caught a cold in November, and decided in December to stay home till she got well. Five years later, she is still at home.

She takes Xyrem, a sleep aid which has reduced her brain fog. She tried Ashok Gupta’s Amygdala Retraining program and noticed an improvement within three weeks. She also incorporates meditation.

She improved to the point that she could ride her bike 30 miles in a day, rest the next day and then do 30 miles again the following day. She was able to swim 2500 meters. Running, however, would still bring on symptoms, so she’s given that up.

In August, 2012 she had a crash due to family stressors. She has been regaining ground since then, though, and expects to regain all that she lost in her crash. She will never go back to her old job, but she expects to be able to do some type of work at some point.

Her advice is to determine your limits and don’t exceed them. She said, “My message is, you can improve your life. And you can live and manage with this illness.”

Dan Moricoli

Dan Moricoli had stomach flu for a few days in May 2006, and then something else besides the stomach flu. The flu went away but the other thing didn’t. He was in a fishing tournament at the time and managed to get through it. He’s been sick ever since.

For the first couple of years he would have periods of 2-7 days of being bedridden. He would also have periods of 2-3 days when he felt alright, so he would act like he would normally, and end up back in bed. He sometimes would crash which would result in being unconscious. He saw and heard nothing, was aware of a blackness, aware of nothing else.

Dan wasn’t getting any better, but then he found Dr. Klimas and the University of Miami. He was in a research study about nutrition. He began to watch his nutrition and felt a bit better.

Dan said that the VO2 max test made a difference. He has had no crash in over two years. He thinks he’s between 80-85 percent restored. He is convinced that the VO2 max test was the breakthrough. He began to connect how he felt with what he was doing physically. Physical stress and cognitive stress can both take him down.

Stressors bring on slurred speech, cognitive difficulty, and being physically wobbly. He makes a point of being aware of this before symptoms begin, and rests. He lays down in a dark room for 10-20 minutes, and usually he will feel better.

Dan said that the first component of his recovery was accepting that he has a condition that will probably never end, that isn’t currently treatable with medicine. He doesn’t waste any energy fighting it or being angry about the limitations.

Secondly, he’s learned to pace himself.

Thirdly, Dan works at becoming as healthy as possible. He’s careful about his diet, and staying hydrated, drinking at least 98 ounces of water and a drink called Nuun which contains electrolytes. He watches his weight, losing 16 pounds in recent months, and he notices that an improvement has accompanied the weight loss.

Fourthly, he doesn’t expect miracles. It has been two years since the VO2 max test. Recovery is very slow and he now accepts that.

Stress is a biologic event

Upon taking over the microphone, Dr. Klimas made the observation that she thinks it’s interesting that all three guests have said that stress can lay them out. But the political world doesn’t want to say it’s related to stress because this somehow makes it seems less like a real illness.

But as a biologist Dr. Klimas can say that stress is a biologic event. She referred to research involving mice and sarin gas. Unexposed mice were okay, mice exposed to sarin gas were fine. But mice exposed to sarin gas who were also being stressed by shaking their boxes intermittently at the time they were exposed to the gas, became sick and died young.

Stress plays a role in triggering events in this world. “Stress is bad for you. Stress makes you relapse.”

In any chronic illness, stress “is doubly bad. In any inflammatory illness, stress is triply bad because it cranks the immune system on.”

CBT and Exercise

Cognitive behavioral therapy is controversial, in part, Dr. Klimas said, because of the way many professionals in the UK handle ME/CFS, treating it like psychological dysfunction. But Dr. Klimas and her team maintain that exercise and CBT are good.

Two of the interviewees said that exercise can be good if you do it gradually, and don’t push beyond your limits. Approach it gently and learn where your threshold for safe exercise is.

Autonomic dysfunction is “not a driving force of your illness, but it is a consequence of the illness that makes you perpetuate your illness.”

Reconditioning within your limits can make a significant difference. It sounds simple, but it is very challenging to carry out successfully. Each time you miscalculate and relapse, it adds to the difficulty to try again next time. But if you can make yourself try again, you may find real benefits.

“Everyone has a different door”

Dr. Klimas has seen thousands of patients, and many recoveries. And recovery can come by many different routes. Her philosophy is that if something that works for 80 percent of people isn’t working for you, don’t hurt yourself with it, and stop. “We will keep on plugging with you. Because everyone has a different door.”

In the past, the approach has been very traditional, with placebo-control, doing clinical trials. But Dr. Klimas said that they were now opening the door to naturopathy. “We’re going Eastern … ” she said with a smile, to find things that work, and to prove their benefits.

Questions

Dr. Klimas invited questions from the audience.

Sue was asked about getting long term disability. She has it through her employer, not Social Security. She had won a closed period claim with SS when she was still well enough that she thought she’d return to work. Her employer had been supportive and on board with the conclusions of her doctors and she had no problem there. Sue is fortunate in that she belongs to a union that has a lawyer who handles these types of matters. If she has a problem she can call the lawyer to go to bat for her.

An audience member shared that the fact that a patient can go grocery shopping can be held against them in terms of receiving disability. Dr. Klimas commiserated, saying what we all know to be true — that the patient probably had to rest before their half-hour trip, and then go straight to bed when they got home. But that is so often dismissed.

Another member of the audience asked about dietary changes. Sue has made no changes. Dan has changed quite a bit. He now eats very little red meat, having chicken and fish instead, but mostly vegetables. He eats small portions and has found he does better eating far less than he used to. He no longer drinks wine and finds he’s better without it.

He does mindfulness training, yoga, and recently meditation. He tried Gupta and didn’t continue with it. But he wanted to say to the audience that Sue’s Gupta and his mindfulness achieve much the same goals. “It’s really powerful.”

Dr. Klimas recommends growing your own food in your back yard because of the junk in our food. She said, “It’s very likely many of you do not detoxify. A good test: Do you tolerate normal amounts of normal medicines? Oho! Your detoxification pathways aren’t working too well.”

There are a lot of toxins in our food, so try to avoid as much of the toxicity as you can. Wash off pesticides, try to buy fresh and local.

One audience member said she is gluten-free and focuses on being anti-inflammatory. Dr. Klimas said that gluten tests are not perfect. False negative rates are very high. It wouldn’t hurt to go free for several months.

Coming back to the important topic of stress, Dr. Klimas said that we with ME/CFS have an impaired stress response. Our bodies makes cortisol, which is anti-inflammatory, but we have such little adrenal reserve that we can’t make that pump of cortisol. “In fact, genomically you shut it off … The genes that should be turning on our stress response are turning off your stress response … You don’t do well with stress because you don’t have the right mechanism in play.”

We look forward to more research, more advocacy and more understanding from this champion and her team.

 

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24 comments

{ 24 comments… read them below or add one }

Sasha March 12, 2013 at 3:01 am

Thanks for this report, Jody. I watched that video a while back and I'm sure it wasn't easy to summarise!

I latched onto one thing from that talk, which was to have a go at going gluten-free for a while to see if it had anti-inflammatory effects. I've been doing it for ten days now, but from the very first day my chronic sinusitis cleared up enough for me to lie on my side at night. For years I haven't been able to do that because my nose would become congested within a few minutes and I'd have to lie on my back in order to be able to breathe. Very surprising to me to get a good result so quickly. Who knows what these small gains add up to…

Jody March 12, 2013 at 6:27 am
Sasha

Thanks for this report, Jody. I watched that video a while back and I'm sure it wasn't easy to summarise!

I latched onto one thing from that talk, which was to have a go at going gluten-free for a while to see if it had anti-inflammatory effects. I've been doing it for ten days now, but from the very first day my chronic sinusitis cleared up enough for me to lie on my side at night. For years I haven't been able to do that because my nose would become congested within a few minutes and I'd have to lie on my back in order to be able to breathe. Very surprising to me to get a good result so quickly. Who knows what these small gains add up to…

Sasha

I have gone the gluten-free route for about a decade, as part of a low carb regimen that works well for me. Going low carb also meant avoiding grains, and therefore gluten. I couldn't believe the change within a matter of days. One of the changes was a reduction in a sortof low key sense of anxiety that had been with me since childhood. The feeling of vibrating that began with ME/CFS decreased substantially. Numbness and tingling too. Stomach issues like cramping and pain that had appeared with ME/CFS disappeared.

I don't have celiac disease and likely tests would not show any problems. But changing my diet showed me. I can "cheat" occasionally. Pizza for instance.:) But not very often, or I have symptoms start up.

For those who are sensitive to gluten, this can really transform things.

I'd also like to mention my experience with meat was the opposite of Dan's … just in case there are any readers who think they must avoid meat to recover. That may well be the case for many. But there are also many of us who get sicker without meat. The main thing, and I know the three guests would agree, is to find what works for you, and stay with it.

Sasha March 12, 2013 at 6:32 am

Yes, I got sicker when I tried to avoid meat. I've also gone grain-free as well as gluten-free and hence accidentally low-carb but haven't noticed any benefit.

That was kind of the frustrating thing about that presentation by the patients – all trying different things, no doubt on all sorts of treatment regimens from Dr Klimas at the same time, all with different disease profiles…

William Holder March 12, 2013 at 2:21 pm

BS – I seriously doubt either of these three had CFS – vitamin supplements – a sleep aid – a VO2 test? Give me a break.
This looks like an attempt to show progress where there really is none. If some doctor told me I just had to take more vitamins or get more exercise – I'd be tempted to break her nose. That's the same advice I've been getting for 18 years from former friends (they don't hang around when you can't play anymore) and my family. I and probably a lot of others here can vouch that this is BS and it doesn't create any admiration on my part for this doctor. If she doesn't have anything than say so – don't parade someone around who can bike 30 miles every other day – that's a highly trained athlete. If I could bike a few miles three times a week I'd consider myself cured.
The doctor is right about one thing CFS is more pronounced after physical or mental stress. Our systems are broken.
I truly, truly, truly, truly, truly wish that vitamins or a little more exercise could make me better – this kind of BS, especially from doctors needs to stop.

redrachel76 March 12, 2013 at 3:02 pm

Thank you Jody. It's great that I have got the opportunity to read about Nancy Klimas. I only knew her before as head of the CFS association. I have to be brutally honest. From this report I think she is not a good doctor. I would not chose to go to her.
In the 3 case reports – one was a 60 year old woman who is still working well at 67 and her claim of having no immune system at all then suddenly getting well by a few magic supplements does not sound like CFS. The 2nd case had a big improvement on Ashtok Gupta's nonsense of "retraining" the brain. The third patient- Dan, I am completely confused about. How could a VO2 max test make him get better?
The whole thing was just nutrition and stress relief. There was nothing on low blood volume, POTS, what specific immune abnormalities are found to exist etc.
Please don't think I am ungrateful to you for reporting. In fact I appreciate the chance to read this because I did not know much about Nancy Klimas.
I just felt unhappy with what Nancy Klimas said.

redrachel76 March 12, 2013 at 3:10 pm

I only now read William Holder's comment. It's exactly what I wanted to say.
I'm disgusted by her saying that she's "going eastern" for treatments and research. How about funding that gene research that was dropped or Rituximab beyond Norway's paltry funding, or testing blood volume and formulating a tilt test or SPECT scan that can diagnose CFS to 90+% accuracy. I'm surprised the audience were such wimps and did not ask tougher questions. I went to a local conference with a similar stress/exercise doctor and the audience was just as bad.

Jody March 12, 2013 at 5:07 pm
Sasha

Yes, I got sicker when I tried to avoid meat. I've also gone grain-free as well as gluten-free and hence accidentally low-carb but haven't noticed any benefit.

That was kind of the frustrating thing about that presentation by the patients – all trying different things, no doubt on all sorts of treatment regimens from Dr Klimas at the same time, all with different disease profiles…

Sasha

Yeah it can be frustrating. But I think it's the reality of ME/CFS, and the fact that there are likely many different conditions under that umbrella. Seeing an array of people with different conditions that respond to some different treatments is a reminder that there are a number of different things that work for different folks. Hearing the different possibilities may help those who maybe haven't heard of some of these methods, that may also work for them.

Jody March 12, 2013 at 5:08 pm
redrachel76

Thank you Jody. It's great that I have got the opportunity to read about Nancy Klimas. I only knew her before as head of the CFS association. I have to be brutally honest. From this report I think she is not a good doctor. I would not chose to go to her.
In the 3 case reports – one was a 60 year old woman who is still working well at 67 and her claim of having no immune system at all then suddenly getting well by a few magic supplements does not sound like CFS. The 2nd case had a big improvement on Ashtok Gupta's nonsense of "retraining" the brain. The third patient- Dan, I am completely confused about. How could a VO2 max test make him get better?
The whole thing was just nutrition and stress relief. There was nothing on low blood volume, POTS, what specific immune abnormalities are found to exist etc.
Please don't think I am ungrateful to you for reporting. In fact I appreciate the chance to read this because I did not know much about Nancy Klimas.
I just felt unhappy with what Nancy Klimas said.

Redrachel

I'm glad to have provided the opportunity for you to read about the session.

Jody March 12, 2013 at 5:13 pm
redrachel76

I only now read William Holder's comment. It's exactly what I wanted to say.
I'm disgusted by her saying that she's "going eastern" for treatments and research. How about funding that gene research that was dropped or Rituximab beyond Norway's paltry funding, or testing blood volume and formulating a tilt test or SPECT scan that can diagnose CFS to 90+% accuracy. I'm surprised the audience were such wimps and did not ask tougher questions. I went to a local conference with a similar stress/exercise doctor and the audience was just as bad.

Redrachel

Because my experience has been that such "eastern" treatments have made a difference for me, I was happy to hear that someone is willing to incorporate such methods.

The fact that it may not work for everyone doesn't change the fact that these things help many people with ME/CFS. Alot of alternative methods that use supplements and so forth do often help people with chronic conditions. That does not mean that they are not seriously ill. I was so sick I could hardly talk and spent years in my bed most of the time.

I saw specialists and got no helpful suggestions from them. My naturopath has been the one who has helped me to gradually recover more and more of my life. Acupuncture, chiropractic and supplements as well as dietary changes have made enormous changes for me.

I am glad that a whole range of treatments are not being ignored, when for many people they can bring healing, whether in whole or in part.

jimells March 12, 2013 at 5:15 pm

Dr. Klimas recommends growing your own food in your back yard

I'm glad I didn't travel to Florida to get this advice. If only I were well enough to have more than a couple of squash plants…

Jody, thanks for your report, I'm sure it was a lot of work, but I don't find the conference very encouraging.

Jody March 12, 2013 at 5:17 pm
jimells

I'm glad I didn't travel to Florida to get this advice. If only I were well enough to have more a couple of squash plants…

Jody, thanks for your report, I'm sure it was a lot of work, but I don't find the conference very encouraging.

Jimells

Hopefully there will things in the other videos I'll be writing up that will offer something helpful.

lnester7 March 12, 2013 at 5:18 pm
William Holder

BS – I seriously doubt either of these three had CFS – vitamin supplements – a sleep aid – a VO2 test? Give me a break.
This looks like an attempt to show progress where there really is none. If some doctor told me I just had to take more vitamins or get more exercise – I'd be tempted to break her nose. That's the same advice I've been getting for 18 years from former friends (they don't hang around when you can't play anymore) and my family. I and probably a lot of others here can vouch that this is BS and it doesn't create any admiration on my part for this doctor. If she doesn't have anything than say so – don't parade someone around who can bike 30 miles every other day – that's a highly trained athlete. If I could bike a few miles three times a week I'd consider myself cured.
The doctor is right about one thing CFS is more pronounced after physical or mental stress. Our systems are broken.
I truly, truly, truly, truly, truly wish that vitamins or a little more exercise could make me better – this kind of BS, especially from doctors needs to stop.

I am on their protocol, but they add medicine when needed. I am very happy with my progress and I am at a 9 right now (with meds) it has taken them one year. They have very basic vitamins (COQ10,C,b12,Fish oil) the rest I am is medicine (Thyroid, antiviral, LDN, Sleep Meds, inmune modulator, Midodrine, Florinef). The only things I still have restrictions in is: extreme Heat like sauna, Sun exposure, Running (I can walk up to 5miles, try to do at least 2miles a day).

Yes I have CFS used to have extreme low NK cell (which are low normal now), Low T cell, High Bcell, Dysautonomia, HH6v reactivation, EBV (current new one), Cosaxie (Has been cured). Parvo (no idea I forgot to ask or check the tests). I have Baaaaaaaaad PEM, but it has been much better since I take midodrine.

jimells March 12, 2013 at 5:30 pm
lnester7

I am on their protocol, but they add medicine when needed.

What I find so puzzling is the huge discrepancy between your experiences and this conference. Your personal story is more compelling than what's on the video. It's almost like there's your Dr Klimas and team as well as an evil twin who promotes GET and CBT. How can that be???

Valentijn March 12, 2013 at 11:55 pm
redrachel76

The third patient- Dan, I am completely confused about. How could a VO2 max test make him get better?

I think that one was probably due to finding a heart rate limit due to the VO2 testing. So by staying under that limit, he avoids triggering crashes.

Valentijn March 13, 2013 at 12:06 am

Autonomic dysfunction is "not a driving force of your illness, but it is a consequence of the illness that makes you perpetuate your illness."

I think this sounds very similar to some of the worse CBT/GET stuff. And I'm not sure what she means by it making us "perpetuate [our] illness".

Reconditioning within your limits can make a significant difference. It sounds simple, but it is very challenging to carry out successfully. Each time you miscalculate and relapse, it adds to the difficulty to try again next time. But if you can make yourself try again, you may find real benefits.

I think this highlights a major difference between the Klimas approach and CBT/GET: she's trying to find an objective and clear limit to our activities which should not be exceeded (because it triggers disabling symptoms), versus "gradually increase activity until you stop thinking you're sick" (because you really just have an exercise phobia).

Due to the extensive harm caused by the CBT/GET crap, I really really do not like it when proper ME/CFS researchers are incautious with their language regarding perpetuation and exercise. I think Klimas has had a bit of a problem in this area lately, but reading everything in context, her message on the subject is a matter of pacing, not GET.

I'm also very interested in the theories about an opportunity for some improvement if we don't exceed a determinable heart rate. I'd probably have to stop walking upstairs to give it a proper try, but it might be worthwhile to see what happens.

Starfive March 13, 2013 at 12:55 am

maybe I missed something…but is there any mention of the unbearable pain that many of us suffer from? I would hope cfs/me doctors would talk about pain treatments and how they differ from patient to patient, if antivirals help the pain, etc.

jimells March 13, 2013 at 12:32 pm

I tried a heart rate monitor in 2011 until the non-replacable battery in the chest strap died. I found it helpful, but it did not stop crashes due to emotional stress, such as the never-ending attempts by state agencies to cancel my meager benefits. I find it hard to believe that many of us can experience big gains in functionality simply by meditating and watching our heart rate.

Valentijn March 13, 2013 at 12:47 pm
jimells

I find it hard to believe that many of us can experience big gains in functionality simply by meditating and watching our heart rate.

Me too, but I'm willing to give it a shot.

Of course, now I'm having a POTS episode and just sitting with my feet up sends me over the recommended level. :confused:

SOC March 13, 2013 at 12:53 pm

I, too, found these patient stories somewhat puzzling. First and foremost, "some supplements" and Gupta "brain retraining" were never even suggested to me by Dr Rey (Dr Klimas' partner). Like Inester, I've been advised to take those basic vitamins plus vitamin D, but mostly my treatment is prescriptions for sleep, pain, low blood volume, hypothyroid, viruses. Other than that I'm encouraged to use pacing based on exercise testing, do some very, very, very mild exercises which will help reduce blood pooling, and increase physical activity as I am able.

I'm also not convinced that early retirement and permanent disability are my hope for the future. I want to hear about people who are fully functioning even if they have to, say, take meds to stay that way. That sound like hope to me. So these peoples' stories don't give me loads of hope. Maybe I'm not hearing them the right way…?

It feels to me like there are two different messages here — the one I get when I go to Miami, and the one that came out in this meeting. Grow my own vegetables? Seriously? I can't even cook my own meals reliably. Is Dr K seeing many patients that are a lot less sick than I am? :confused:

Forebearance March 13, 2013 at 1:54 pm

Thank you for the report, Jody!

It sounds to me like these three people had mild cases of CFS. I'm betting that those types of cases aren't well-represented in online support groups. I bet most people who post here have medium or severe CFS.

So basically the hope that the presentation offered seemed to be that people with mild CFS who haven't been sick very long can get well. Or at least a lot better. We have always known that. I find cases like Dr. Deckoff-Jones' more hopeful. She became able to go back to work by taking anti-retroviral drugs.

HowToEscape? March 13, 2013 at 3:03 pm
SOC

I, too, found these patient stories somewhat puzzling. First and foremost, "some supplements" and Gupta "brain retraining" were never even suggested to me by Dr Rey (Dr Klimas' partner). Like Inester, I've been advised to take those basic vitamins plus vitamin D, but mostly my treatment is prescriptions for sleep, pain, low blood volume, hypothyroid, viruses. Other than that I'm encouraged to use pacing based on exercise testing, do some very, very, very mild exercises which will help reduce blood pooling, and increase physical activity as I am able.

I'm also not convinced that early retirement and permanent disability are my hope for the future. I want to hear about people who are fully functioning even if they have to, say, take meds to stay that way. That sound like hope to me. So these peoples' stories don't give me loads of hope. Maybe I'm not hearing them the right way…?

It feels to me like there are two different messages here — the one I get when I go to Miami, and the one that came out in this meeting. Grow my own vegetables? Seriously? I can't even cook my own meals reliably. Is Dr K seeing many patients that are a lot less sick than I am? :confused:

"I’m also not convinced that early retirement and permanent disability are my hope for the future."

Until this disease is properly recognized there's a vice effect. We must limit our activity and busyness levels to what the body quietly requests. But retirement/disability tends to be a downhill slide unless one is
1. wealthy enough to truly afford it
AND
2. has sufficient friends, family and something useful to do that one doesn't become even more vegetative than the disease would impel

I'm on disability myself and would rather work, but since I would not last a full day without sleeping on the job I don't have that option. Working a bit then getting fired would be a disaster! Had a part-time, project-based work at home option been available I could have avoided a ton of grief.

The only "answer" is to shift into an amount of work that is slightly under one's sustained physical capacity, including other normal life activities. That may not work for your employer; someone who can work half a day or 2 days per week doesn't fit into a normal workflow. IF what we were dealing with were generally understood or at least known to be a Big Deal, like cancer or HIV then the world at large would be more likely to work with us.
Right now there's no correct choice on the menu.

Jody March 13, 2013 at 5:27 pm
Forebearance

Thank you for the report, Jody!

It sounds to me like these three people had mild cases of CFS. I'm betting that those types of cases aren't well-represented in online support groups. I bet most people who post here have medium or severe CFS.

So basically the hope that the presentation offered seemed to be that people with mild CFS who haven't been sick very long can get well. Or at least a lot better. We have always known that. I find cases like Dr. Deckoff-Jones' more hopeful. She became able to go back to work by taking anti-retroviral drugs.

You're welcome, Forebearance.

Just going by my own experience, I wouldn't assume that someone started with a mild case on the basis of the fact that they have been getting better.

I was unable to function for a number of years. I spent 16 hours a day in bed, and my actions when I was up to it were doing a bit of laundry, making dinner, spending half an hour with my family in the evening before going back to my room. I couldn't sit in a room with a tv on, my husband had to take the batteries out of a clock because its ticking drove me out of the room. I had such vertigo that walking across the room was an enormous challenge. Thinking for more than a few minutes would send me to bed.

I had weird sensations like vibrating, numbness and small explosions of pain that would happen all day long, for over a decade. Big improvements back then were being able to walk for two minutes to the stop sign then back home and into bed, panting for air.

I had such muscle and joint pain I couldn't hold a pen. I had to fill out my naturopath's form in 5 minute increments, over a period of a week or so. At the end of 5 minutes I was mentally blown, vibrating, and gasping for air. And off to bed.

I could go on but who needs to hear all this?

My improvement really began with my naturopath and "just" supplements. It took many months to see any improvement, but that's where the improvements came from.

I was lucky to be able to work part-time online starting 4 yrs ago. Only worked maybe 4 hrs a week, and it was all I could handle. Gradually over the next 3 yrs, I took on more work as I was able to, and as of last winter, I was working online 50 hrs a week. It took everything I had but I did that for the better part of a year. Then some downsizing at work cut back my hours some but if that had not happened I would still be working 50 hrs a week.

It's online, not like having to get dressed and go out, I don't have to stand up or count change or deal with customers. I can take breaks whenever I need to and everything is written down in an email or document so my lousy memory isn't a problem.

People might look at me and assume I must not have been very sick. They would be way off the mark. I had no life for years. I am fortunate to have … probably 3/4 of a life now, and reason to expect it to become more as I stay on my supplements and continue to pace myself.

Starfive March 14, 2013 at 12:57 am

How great for you Jody to have a job that fits with your recovery!
I miss working.

Jody March 18, 2013 at 8:05 pm
Starfive

How great for you Jody to have a job that fits with your recovery!
I miss working.

I hear you, Starfive.

I can totally understand that. Hang in there.

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