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tree corridor

Serenity For Spoonies #10

This is the next installment of photos I find particularly intriguing and/or relaxing. If you don’t know what a spoonie is, here’s a short article that explains it.

desert winter scene
Winter in the desert taken by Patrick Hendry
sunrise over ocean
Another great shot by Patrick Hendry
tree corridor
This reminds me of Johns Island, SC where I lived for several years. Photo credit to Patrick Fisher

As always, if you would like something different, please let me know.

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waterfall

Serenity For Spoonies #8

This is the eighth in a series of posts inspired by photos that make me and hopefully you, more relaxed by looking at them, imagining myself in them and feeling the environment of the shot. If you don’t know what a spoonie is, here’s a short article that explains it.

waterfall
Doesn’t this look like something from The Hobbit? Waterfall by Robert Lukeman.

 

seascape
Seascape by Ron Whitaker

 

tree and lake
A moody photo of a tree and a lake by Peter Oslanec

Gardening Hacks To Grow Abundantly This Summer

Remember a few weeks ago when I wrote about Marjory Wildcraft and her homestead in Texas? She’s offering a FREE 72-hour viewing of a very simple gardening system she developed starting March 20th and continuing until the 22nd. I receive a small fee for everyone who purchases the lessons after seeing her videos. 

ad for grow half your food in an hour/dayDisabilities aside, what if you could grow half of your own food, gardening organically, right in your own backyard garden in less than an hour each day?

No, Wisconsin is STILL a state where medicinal cannabis is outlawed so I’m not smoking/vaping/eating as I write this.

In this new system, Marjory takes all the guesswork out of growing your own food, so that almost everyone can get started today and be growing half of their own food within a year’s time.

Perfect for anyone worried about power failures

While literally anyone can get started, the system involves raising rabbits and chickens, as well as growing vegetables, in a way that does not require refrigeration or any electricity. 

If you live with or know someone who can’t spend hours working in a garden every day but wants to have healthy, nourishing, homegrown food, let them know about this free opportunity.

Marjory will walk through everything step-by-step. Even if you have no room or desire to raise animals, watch for the information on growing veggies.

The knowledge and insights compiled in this film take years to learn on your own, as Marjory did herself. But they are presented here in a system that eliminates the time-consuming research and trial-and-error that prevent you from successfully growing your own food.

Gardening guesswork is eliminated

Here’s what I mean. Marjory broke down the nutritional needs of the average person eating a healthy diet. She projected those needs out for an entire year. Then she identified three core components that, together, can supply half of the nutrition you need.

Marjory Wildcraft has helped thousands of people to start growing their own food. Her books and videos are used by governments and universities around the world. She condensed all her decades-long experiences into this simple new system.

Eliminate the research, and trial and error that slow you down. You can have fresh homegrown food on your table as soon as possible.

Click Here

To reserve your spot at the 72-Hour FREE Viewing

How to Grow Half Your Own Food is a brand-new system. But it already is a huge success with members of Marjory’s Grow Lab. Unlike lab members who pay a monthly fee, Marjory Wildcraft is making it available to you–for free–March 20 – 22, 2018.

There’s literally nothing to lose and a lot of good information to gain by registering to watch the videos.

People who register for the video series also receive free bonuses

seed catalog
Never GMOs, many open-pollinated, heirloom and organic seed producers from around the world

This ebook lists companies that have pledged that they “do not knowingly buy, sell, or
trade genetically engineered seeds,” thus assuring consumers of their commitment.

All of the Grow Network directors favorite seed companies are on this list.

Inside this ebook, you will discover small farms or stores selling heirloom, open-pollinated seeds. You’ll also find guidance on what works best in your area–no matter what climate and soil challenges you face. All the companies listed are members of The Safe Seed Pledge.

Ronnie Cummins
Ronnie and Marjory demonstrate seven ways backyard gardening helps the environment while helping you get healthier

From carbon capturing to animal husbandry, Ronnie Cummins and Marjory Wildcraft teach seven ways backyard gardening significantly reduces– and even repairs–damage to our Earth. 

Learn ways you can help reverse soil depletion and desertification. 

You will see an in-depth comparison of nutrition and quality from small, organic farming vs. factory-farmed animal products. You will find resources for better water capture and conservation, too. 

Discover the environmental and health benefits of integrating farm animals with your gardening. I would love to use the “chicken tractor” even though I live in a city that doesn’t allow backyard chickens!

free TGN membership
Membership in The Grow Network helped me, disabled for 11 years, to successfully garden in just a few hours week

The Grow Network is the online home of a global community of people who are producing their own food and medicine.

If you want to take a few steps back from relying on grocery stores and big ag by reclaiming your health and food supply then you are one of us.

There is a bi-weekly newsletter on how to produce your own food and medicine, too. The Grow Network also has forums, a marketplace, seed swaps, even dating, and farms for sale. You can also read about inspiring neighborhood changemakers.

You literally have nothing to lose by registering to watch the free video series. Plus, you’ll receive those free bonus materials. Here’s your final opportunity to register!

 

 

powerful thoughts meme

Secondary Gain Reinforces Misconceptions About Invisible Disabilities

powerful thoughts memeThe placebo effect can be a double-edged sword. Yes, definitely what you think impacts how you feel. This has been demonstrated to the point where it is no longer in dispute. However, it doesn’t mean our disease(s) is all in our heads.

But did you know that there is a recognized medical thingy called “secondary gain”? (I use “thingy” in place of the word I cannot recall at the moment.) It was even taught in my nursing Master’s program.

Secondary gain is the “good” things that go along with being disabled

Such as no longer needing to work because Social Security pays you instead, taking your dog with you into stores and restaurants, people feeling sorry for you in a way that makes them want to help, government programs that mean you pay nothing or a sliding scale for some services, getting a break on your rent if you live in designated housing. free or low-cost transportation to doctor appointments, the list goes on and on.

We know this is total BS and would give it all up to be healthy again

Unfortunately, this misconception that we remain sick to reap all these benefits is often at the root of why some people think we’re faking illness.

The thinking is that once a doctor can’t find anything wrong, then you can convince yourself you are fine. If you aren’t willing to do this then it’s because of secondary gain.

After all, so this line of thinking continues, you wouldn’t be able to go running from doctor to doctor looking for something wrong if you had to come up with a copay for the visits. If the taxpayer (and here they usually put a hand on their chest) wasn’t paying for this unnecessary expense through Medicare and Medicaid.

I would go close to ballistic whenever someone voiced that kind of opinion when I was working in hospitals. It’s possible I changed some minds. I’d like to think so.

Unfortunately, most Republicans in Congress, in our medical facilities and in our neighborhoods honestly believe in secondary gain, although they won’t admit it unless among like-minded friends and co-workers. That’s the whole reason behind the new work requirements for welfare, after all.

Guest post: Eating Disorders and Diabetes

Stiina Marie is an American who blogs from Norway. I flirt with prediabetes (100-125 mg/dl) when my diet is carb-heavy. I’ve thought long and hard about how I would manage my day, my meals and my exercise if I passed the arbitrary 125 mg/dl cut off point. I know I would be as frustrated as she is. This is why I take precautions, such as losing weight (down to 177.5–a loss of 2.5 lbs this past month) keeping my fasting blood sugar below 100 mg/dl and eating real food instead of processed.

 

Eating Disorders and Diabetes

by Stiina Marie

I sat there, once again in the chair, ready to be bombarded with weight, exercise and eating questions. This was like my brain, 24/7. Don’t they understand? I plan all my meals, my drinks, my exercise, and weigh myself several times a day hoping the number changes. I don’t need to be constantly reminded I could die if I don’t care as much as I do about my habits and body. I don’t like being told it’s not enough but I’m told that every time I sit in that chair.

This has been my life for five years.

giphy

Medical personnel don’t seem to realize the mental toll it can take on a diabetic. I wondered if this kind of talk and constant reminding could conjure an eating disorder. I was sadly right. These are disorders common to specifically those with diabetes:

  • Orthorexia: A fairly new disorder label, this disease is about being obsessive about what you eat to the point that you actually hurt yourself.  One cares so much about nutrients and what not to eat they can become almost phobic of certain foods that are deemed “impure”, leave out foods/food groups in their diet, worry obsessively about their next meal and need to be in control of what they consume.  Hours are spent planning out food, researching and looking at food. 
  • Diabulima: This type of disorder refers to stopping, lessening or skipping insulin injections and running a high blood sugar in order to lose weight.  This is very dangerous to do because high blood sugars can land you in a coma and/or cause death. They can also cause problems in the long run such as kidney failure and blindness. I will not mention how this is done specifically because it can be well hidden from doctors and other people.

tenor1

Considering these are indeed issues in the diabetic community, I am shocked and appalled there isn’t much light shed on them through medical personnel know of them. I know they do because I was asked if I was skipping insulin doses to lose weight (diabulima). I told them I didn’t have a clue that skipping insulin would do that. She politely nodded and said okay and moved on without much explaining. Google researching told me about diabulimia and another blog author’s information lead me to find orthorexia.

I really believe these two disorders should be added to that fancy-shmancy DSM manual thing. Oh yeah, they aren’t officially disorders. Strange, huh? These disorders won’t go away as long as diabetes is becoming more common and healthcare professionals don’t acknowledge them as an issue. There needs to be a plan. How do you talk about diabetic needs without making the diabetic individual obsessive? How do you discuss positive body image when diabetics typically have weight problems? More importantly, how do you treat individuals with diabulima and/or orthorexia that are still diabetic?

 

The Man Who Changed ME/CFS Treatment Recommendations

This interview with ME/CFS “knight in shining armor who rode to the rescue” was initially posted on Anil Van Der Zee’s eponymous blog.  Anil was born in Sri Lanka and grew up in the north of Holland. He studied classical ballet at the Royal Conservatory in The Hague before working in several ballet companies in the Netherlands and Switzerland. In 2007 he became ill after a viral infection and never fully recover. A few years later he was diagnosed with Myalgic Encephalomyelitis.

David Tuller and the (s)PACE cake eaters

In 2015 David Tuller, DrPH, a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health at Berkeley University started writing 3 very detailed blogs about the flaws of the now infamous PACE-trial. The patient community has been advocating for years, if not decades against these types of trials of Cognitive Behavioural Therapy (CBT) as well as Graded Exercise Therapy (GET) for ME in general as they seem to be doing more harm than good. Unfortunately, they were mostly dismissed as militants and “vexatious”. They were not being heard or believed. That has dramatically changed since Dr. David Tuller started writing extensively about the subject. A real paradigm shift is happening and I’m beyond honored to have been able to meet him, photograph him and ask him a few questions.

David TullerPhoto by Anil Van Der Zee

Hi David, how are you? Thanks for letting me interview you. For the people who are not familiar with the subject, what is the PACE-trial and why is this trial such a big deal?

The PACE trial was the largest study of “treatments” for what the investigators called chronic fatigue syndrome. The investigators claimed it “proved” that CBT and GET were effective treatments for the illness. Given these alleged findings, the trial has had an enormous impact on what is considered the standard of care in the U.K., the U.S, the Netherlands, and many other countries. Yet the study is so flawed, it includes so many violations of core principles of scientific research that its reported findings are completely meaningless.

What was the reason you decided to start writing about the PACE-trial unlike many of your journalist colleagues? Many are reluctant to write about ME in general.

I started reading the patients’ commentaries about PACE and realized that they were right about the flaws in the trial. I understood why others weren’t interested—it’s very confusing to figure the whole thing out. As a journalist, it’s great to have a topic others aren’t covering, and no one was writing about this. I felt if I started looking into it, I could have an impact on the debate.

Could you explain what the main issues were with the PACE-trial?

There were so many issues, so it’s hard to pick just one! Probably the biggest issue is that they have been very explicit in their protocol about how they planned to measure success. But they changed the main outcome measures after collecting data, and all the changes allowed them to report better results than had they stuck to their original methods from the protocol. Then they refused to provide the analyses that they originally promised to provide so no one could tell what the results would have been had they not changed all their outcomes. When patients asked for these anonymous data, the investigators accused them of being “vexatious” and refused. They only did so after being ordered to do so by a legal tribunal.

What were the results of the reanalysis?

The authors themselves published a reanalysis for their measure of what they defined as “improvement.” The published study reported around 60 % “improvement” with CBT and GET. In the reanalysis, only about 20 % “improved” with these therapies, while 10 % “improved” with the comparison arms. That 10 % difference is most likely due to bias because the two therapies include telling patients that these treatments will make them better. Those in the two comparison arms were not told they would get better.

post trial PACE changes

An outside group reanalyzed the findings for “recovery.” They found that the “recovery” rates for the CBT and GET groups fell from 22 % to single digits. The “recovery” rates for the comparison arms were also in the single digits, and there were no statistically significant differences between the groups. In other words, by dramatically weakening their outcomes, they managed to report in the peer-reviewed “recovery” paper that people had “recovered” when in fact no one had, according to their original measures.

What are the biggest flaws in these type of trials? What is wrong with the model that is being used?

The biggest flaw is that they are conducting open-label or non-blinded trials while relying on subjective outcomes—in this case, the outcomes were self-reported questionnaires about physical function and fatigue. An open-label trial means everyone knows what treatment they’re getting. And if the outcomes are subjective, as in this case, they are always subject to significant bias—especially if the treatment arms include telling participants that they will improve with these treatments. In PACE, they had several objective outcomes—whether people got back to work, whether they got off benefits, whether they could walk farther, and whether they were more fit. All these measures failed to match the positive outcomes they reported for the subjective measures. Because of that, they dismissed their own objective measures as irrelevant or not objective after all.

Why have ME and the PACE-trial become so important to you?

I’ve seen the serious negative impact of this trial and its reported results on patients. No one except patients was really taking it on. I thought I could do something to help and demolish the credibility of the trial. I didn’t expect to keep doing this for more than two years, but it became clear that it would take more time and more reporting and more pushing to achieve the desired outcome—which is that the PACE trial and others from this cabal of “experts” are discredited and hopefully retracted.

No one would ever suggest that CBT can lead to “recovery” from Parkinson’s.

Why is ME, according to you, not a psychological illness or a behavioural disorder??

Well, I’m not a clinician or a scientist, so I’m not the one to determine what exactly is causing the illness. It’s just obvious that after 30 years of the CBT/GET paradigm, this approach doesn’t work. The science that is cited to show that it does work is completely bogus—as patients have always known and as I’ve tried to document over the last two years. So in effect, the researchers have disproven their own theory even while claiming their work proves it to be true. On top of that, many very, very smart people have found a host of physiological dysfunctions in patients that make a pretty definitive case that this is not a psychological or behavioral disorder.

CBT and exercise are recommended for other diseases, so why are they so vilified by the patient community and the ME experts?

Patients are not against CBT and exercise per se. CBT is used in many illnesses to help people adapt to their circumstances. And exercise or physical activity—even raising your arm five times from the bed, if that’s what you can do—is important for everyone. Patients object to the form of these approaches when used for ME. The CBT proposed by PACE is premised on the idea that the therapy will alleviate the patient of “unhelpful beliefs” about having an organic disease that gets worse with over-exertion. It’s not the same kind of CBT you get if you have cancer or MS. No one would ever suggest that CBT can lead to “recovery” from Parkinson’s. As far as exercise, it’s the “graded” part that is the problem—the idea that you should keep increasing your activity levels week by week, and that any symptoms are just normal reactions of the body because you’re deconditioned, not a sign that you’re making things worse. But since the core symptom of the illness is not “fatigue” but the relapses patients suffer after over-exerting themselves, then GET is clearly contra-indicated as a treatment.

In the US things are changing. There’s a real paradigm shift happening. Could you elaborate on this?

The U.S. Centers for Disease Control has removed CBT and GET from its recommendations for the illness. That’s a huge change. The NIH is finally spending more money for decent research—although of course not enough. But there is an acknowledgment now that this is a medical disease and that the patients have been poorly served by the longstanding neglect of government agencies. The change is slow and it’s far from enough, but it’s a big shift nonetheless.

quote-first-they-ignore-you-mahatma-gandhi

This is obviously amazing. Huge. Especially knowing your work has been instrumental in helping this movement shifting in the direction that it’s taking and it’s not only in the US. The same is happening in other countries, even in the Netherlands. That must be a fantastic feeling for you?

Yes, definitely. I feel really good about what I’ve done. But of course, others have played instrumental roles as well. I think I was able to help elevate the concerns patients were already expressing to a more prominent level and greater visibility among scientists not involved in the issue. So I sort of bridged a gap between patients and the academic world. Before it was much easier for the PACE team to make it seem like just crazy, anti-science patients were complaining and objecting. Now the conflict is scientists vs. scientists—and that’s a much better place to be. On the basis of the science, they will ultimately lose.

In the Netherlands scientists like Gijs Bleijenberg, Jos van der Meer or Hans Knoop still push CBT and GET as the preferential treatment for ME or rather CFS. They also claim that the PACE-trial was a one-off or that there is actually nothing wrong with it. That there is nothing wrong with the CBT and GET as a whole. Especially with the trials taking place in the Netherlands. Do you agree?

No, of course not. They are just blowing smoke out of their asses. Their studies are as bad as all the others.

So you feel that the Dutch trials, like for example FITNET contain the same flaws as the PACE-trial?

Not all the same flaws, but the basic design flaw is the same. These are mostly open-label trials relying on subjective outcomes. This design will always produce unreliable and biased results. The studies have also shown, with the use of actometers that measure how far someone walks, that the reported benefits from subjective outcomes are not matched by any improvement in this objective measure.

With everything that is currently happening in the US and honestly worldwide it seems very odd that these scientists still keep holding on to these beliefs. As a patient, I sometimes wonder if these Dutch scientists had a little too much space cake. Not the Potato eaters but the space cake eaters. Or in this case, the (s)PACE cake eaters because their claims are completely off. It’s based on smoke and mirrors. Science is moving on.

What do you think is the reason they keep coming up with these claims that are now going against the largest institutes in the world?

The s(PACE)cake eaters.

I think people are easily self-deluded. This is a paradigm shift. Those embedded or invested in the old paradigm will always have trouble giving it up, even in the face of overwhelming evidence. That’s what’s happening here, I think. If you’ve spent decades promoting a certain ideology or belief system, as they have, then acknowledging that this is fatally flawed is an overwhelming blow to their self-identity, ego, and so on. We’re asking these researchers to admit that not only have they been wrong but that their mistakes have harmed many people. That would be difficult for anyone. In that sense, I have some sympathy for them. I mean, not much sympathy, but I understand why what they have to do in order to do the right thing is a very, very difficult thing to do. They will probably keep believing that they were right even as the science tumbles all around them.

The Dutch Health Council is currently deliberating on new criteria and care for people with “CFS”. What would this report need to state in order for you to consider this a success?

It would need to do what the CDC did—remove CBT and GET from the recommended treatments. The problem is that people in health care don’t like to admit that they have nothing to offer. If CBT and GET are removed, then what treatments can take their place? We don’t really have anything yet. So I understand why that’s hard for those involved in making these decisions. Many people feel, well, better to offer something rather than nothing, and they might think these “therapies” are benign, so what’s the harm of keeping them until we have something better? But of course the recommended treatments are not benign, so they need to be removed even if something great isn’t available yet.

Professor Steve Lubet wrote a guest blog on the Virology blog about ME patients being militant. Do you feel ME patients are militant or are they simply fighting for their health and as professor Lubet mentioned are in fact pro-humanity, much like the gay community has battled against psychiatry at some point?

“Militant” can sound negative, but it’s not negative if the militancy is in service of an important cause. Of course, patients should be militant in insisting that they have not gotten the treatment they deserve. They are right to be militant, just as gay people were right to be militant about getting homosexuality removed from the list of psychiatric disorders.

Since you started writing, the discussion has shifted from patients vs.scientists to scientists vs scientists. It seems like portraying patients as militants is rather a distraction from any valid criticism?

Yes, of course, that’s the case. And it’s not just portraying patients as “militant” but as hysterical, crazy, anti-science, harassing, and death-threat-making. Of course, some patients have been so enraged that they might have expressed themselves in ways that we would prefer they hadn’t. But the PACE folks and their admirers have used that meme as a way of dismissing criticism they don’t like. They still try to do that, as Professor Esther Crawley has in her disgraceful presentations, but now it’s clear that this frame of the debate is not accurate.

 

https://youtu.be/6zWnVB_2lUU

In your “Tear it up” talk at the ‘Invest in ME conference 2017’, you mentioned how you always trusted the system almost blindly. How do you feel about that now? Some major scientific journals like the Lancet made some huge mistakes and have not yet cleaned up their act.

Well, I don’t know if I said I trusted the system “blindly”! If I did, I was probably over-emphasizing to make a point. I understood that studies had problems and often needed to be corrected and that various interests obviously would try to steer studies in their favored direction. What has shocked me is confronting an entire medical-academic establishment that absolutely has refused to acknowledge the flaws, no matter how obvious they are. I didn’t realize just how difficult it was to get journals to correct or retract what are clearly bogus findings, by any standard. That has made me much more skeptical about any studies I read.

In the conclusion of the reanalysis of the PACE-trial by Wilshire et al, they said the following: “The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.”

Do you feel the medical community has been misled as much as the patients by these types of treatments?

Well, the medical community has certainly been seriously misled. Most doctors don’t have time to read all the studies and patient blogs and correspondence and all that. They see headlines or just get information filtered down through clinical guidelines or recommendations from NICE or the CDC or wherever. They expect to be able to rely on this information as sound. So I don’t blame clinicians who have adopted these approaches based on what they believed was authoritative evidence.

What needs to be done to rectify this?

Changes in clinical guidelines help a lot. The current NICE guidance is up for a full review. When that happens, it will have a big impact. But these organizations also must actively disseminate news of any changes. In the U.S., the CDC has done nothing so far, from what I can tell, to inform clinicians and medical organizations about the change in recommendations. They have been dishonest brokers, and they are still dishonest brokers. Officially, the CDC says it removed CBT and GET because people were “confused” about what the agency meant in recommending them. That’s just bullshit. They won’t admit that they made a mistake, backed the wrong science, and issued terrible recommendations. And as far as I know, they are not proactively reaching out to the organizations and medical centers that continue to recommend CBT and GET.

What are you hoping that will happen next? What should happen next? Where to “PACE” from here?

Getting rid of PACE and the CBT/GET paradigm is a necessary step but won’t make patients better. It will just prevent them from being recommended treatments that can be harmful. The real advances will come when the scientists now researching the physiological parameters are able to narrow in on accurate biomarkers and effective pharmaceutical treatments. I don’t know how long that will take, but certainly, it will be easier if the CBT/GET era is behind us.

David Tuller Pac manPhoto by Anil Van Der Zee. The PACEMAN t-shirt was a present from Anil to David for talking at the Dutch premiere of the documentary Forgotten Plague in Amsterdam.

I want to thank you for taking the time to answer these questions. I also want to thank you for coming to talk at the Dutch première of the Forgotten Plague in 2016 and the screening of Unrest in Leiden 2017. I was not able to attend either event but you were so kind to come and visit me in person at my bedside. I think that I can speak for everyone in the patient community that we are eternally grateful for what you’ve done and for what you’ve accomplished. I don’t think words can describe our gratitude…

Thank you, David Tuller, or how we like to call you by your alter ego superhero name. Thank you PACEMAN!!!

Anil van der Zee

Former professional ballet dancer, teacher, aspiring choreographer & photographer.
Currently life on hold; Myalgic Encephalomyelitis. Blogging out of necessity.

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