TAKE ACTION, PLEASE!!!!!!

[ViewsAskew]

I am posting this on behalf of the WED Foundation. The following was posted on the Foundation's blog. Apparently a doctor in Glasgow has decided that because he's not seen serious WED/RLS symptoms that it must not be happening, that it's not biolgically possible, and that the drug companies are just profiting on something that is subjective and made up. AARRRGH!!!!!!!

Click on the link below to go see the original blog post about it. To comment, you have to join the journal in which the article was posted. PLEASE DO!

We are asking for the WED/RLS community to take action. Please see our blog post: http://wedinfo.blogspot.com/2014/01/tak ... -legs.html and share it with the discussion board.


Thank you.



Jenny Olmanson

[ViewsAskew]

Thank goodness for people like this doctor: http://www.everydayhealth.com/columns/r ... -syndrome/

I can't tell you how angry I was reading Dr Spence's diatribe. Or the comment by the GP who HAS it (WED) and still thinks it's not a big deal and it's just dehydration or a bit of tiredness, so just move a little and drink some water and all is OK.

Golly that makes me mad....

[EeFall]

Thank goodness for people like this doctor: http://www.everydayhealth.com/columns/r ... -syndrome/

I can't tell you how angry I was reading Dr Spence's diatribe. Or the comment by the GP who HAS it (WED) and still thinks it's not a big deal and it's just dehydration or a bit of tiredness, so just move a little and drink some water and all is OK.

Golly that makes me mad....

Just a suggestion, but why doesn't someone post a link to this place and let them see for themselves what has been happening here. I can't even attempt to go to that site, I'm too angry (about everything) and I am fed up with everything and it is because of RLS/WED. I can't sleep at all without medications or I pace until I fall on my face and then get up again and do the whole dang thing over again. The meds make it almost impossible for me to live amongst other people because the meds make me so miserable. 100% of my sleep is because of meds and it just does not work. Now they are trying another new last best hope of a med for me tomorrow. I have lost hope, I can barely function at work, much less society, my home life is crap, I'm worn out. RLS/WED is destroying me. What do you think happens to people with RLS/WED here who stop posting?

[ViewsAskew]

I still can't do it, either. I'm still so mad.

I just don't understand how someone, a scientist, a doctor, could make this determination. To say that there is nothing there? No biology behind this? When we ALL experience something very similar? When the SAME meds help us? There are sooooo many components of this that indicate it's a disease. Hell, they have genes! I'm about to start swearing....

I'd need to calm down and craft something over several days, I think, if I was to be successful. Unfortunately, I have a feeling that posting a link to this wouldn't help him rethink it. He would just say we're all delusional and that nothing proves what we have is related.

[cornelia]

Our vice chairman from the Dutch RLS Patient's Group and chairman of EARLS has commented already. This dr certainly hasn't read my RLS history in the BMJ published May last year. If he had done so he would probably have dismissed me as a psychiatric subject prone to get attention from others. Such people will not change I guess (one of the commenting docs said something like that).

Corrie

[ViewsAskew]

Our vice chairman from the Dutch RLS Patient's Group and chairman of EARLS has commented already. This dr certainly hasn't read my RLS history in the BMJ published May last year. If he had done so he would probably have dismissed me as a psychiatric subject prone to get attention from others. Such people will not change I guess (one of the commenting docs said something like that).

Corrie

That commenting doc made me just about as mad as he did! I say that the Dutch chairman of EARLS responded and wondered if you knew him.

Debates like these are rarely productive, unfortunately. People who hold onto irrational beliefs (no matter what they are about), and belief that opinion is fact, cannot easily be argued with! You can point out the science, but that's been available for years.

The best we can hope for is to change the minds of those who might read it and think there is some validity.

[Polar Bear]

Folks are likely to consider that an article written by a 'doctor' and printed in the BMJ would have had the consideration and approval from the BMJ. i.e. take Dr Spence's article at face value thinking..... well... it's in the BMJ !!

[ViewsAskew]

OK, so this is what I wrote in response....but it's SOOOOO long! Should I post it as is? Reduce it? Also, since I've only had about an hour of sleep tonight, not sure it's coherent. Any comments would be appreciated.

After several readings, I finally trust myself to respond logically and soundly to the “Bad medicine: restless legs syndrome” article written by Das Spence.

Some of what he says is, unfortunately, is absolutely true. WED, or RLS as it is also called, is, as of yet, unexplained. The research base and short duration of studies is an issue. And, as someone who volunteers as a moderator on the Willis-Ekbom Disease Foundation's online Discussion Board, I have read hundreds of stories about WED; it may not be one disease. He also may never have had a patient present with these as, “primary symptoms” in a consultation. And, big pharma’s influence is negatively felt – as it is in many places it should not be.

Some of what he is right about is also, I believe, what he is wrong about. I’ll start with the assertion that no patient has ever presented in his practice with this as a primary concern. I’m sure this is technically accurate. It’s likely untrue, however. What is more likely is that he may have taken the patient down a different path, potentially dismissed the patient’s words, or the patient did not know that such a disorder existed and didn’t know how to talk about it or explain it. Of course, I cannot be sure as I’m not his patient, but it’s just about mathematically impossible.

Here is what I know about patients with WED.
1. Patients do not speak medical language. Instead, they speak in a language they are comfortable with. Patients say, “I can’t sleep.” Or, “My legs bother me.” Or, “My wife says I move around a lot when I sleep.” It is up to the physician to tease out the cause.
2. Patients find the symptoms disturbing and are often a bit skeptical of them, too. They feel strange telling someone about these crazy feelings for which they have no name. They never have heard of the disease and they have no schema for it. They are not comfortable sharing that they feel the way they do. More importantly, there is no common language even for those who do know what it is. I cannot begin to adequately explain what having this feels like. That, undoubtedly, creates issues. The question is whether you can get past these issues and to a correct diagnosis.
3. People may not associate that weird feeling with the resulting poor sleep, especially if periodic limb movements are involved. Which, by the way, are observable. Oh, and by utilizing the SIT test, so are WED movements. But, I digress.

Big pharma’s influence is indeed felt, but I’d argue that Das Spence missed much of the history of the disease when he writes that “the story of RLS is also a big pharma classic.” WEDsymptoms have been written about for hundreds of years. The disease existed long before pharma was involved. Karl Ekbom, 80 years ago, wrote about how helpful opioids were as a treatment. The use of dopaminergics predates pharma involvement by many years, to my knowledge. Talk to any WED patient who has had this disease for 25 or more years. Ask them how much their general physicials listened to them or helped them up until the last 5 to 10 years. Pharma wasn’t paying any attention at all. And because they weren’t, the ultimate catch-22 exists. Without their interest, few studies were done. When we have their interest, they influence the studies. But that has more to do with how we fund research than whether WED exists. As long as development of medicines is for profit, we’re going to have issues. Take opioids and WED. It took until last year for anyone to study opioids in a significant way. That is because pharma did not benefit and there was no reason for them to do a study. It is illogical, however, to say that because big pharma was involved that there were no merits in any of the research. And, until a new system is created, this applies to all research.

I absolutely believe that pharma’s influence regarding who should take medication is likely a problem, something he did not mention. I also absolutely believe that physicians must pay attention to the research on augmentation and dopaminergics, something that I am sure the drug companies would like to pretend did not exist. Dopaminergics absolutely should not be used in certain circumstances and should be used at much lower dosages than originally suggested. I have no doubt that pharma was involved in suggesting a higher rate. I also believe there is no reason for people whose symptoms do not adversely affect their quality of life to take medication.

That does not mean, however, that the benefit of treatment is marginal, as he claims. It means doctors need to do their due diligence, ask questions, research treatment options, and make sure they do not hand out medication for no reason. We all know that big pharma is out to make money, but big pharma does not write prescriptions – physicians do. And, shame on them for writing scripts without doing a bit more homework than simply following the advice of the drug rep.

For the majority of patients whose quality of life is affected, treatment is effective. While we absolutely need longer-term studies, patients can attest to the efficacy of treatment. While some may, most patients I know do not want to take medication without benefit, nor do they continue to. Without medication, for example, I would not be able to leave my house, work, interface with friends and family, or be a part of society. I would not be able to ride in a car, visit my family, travel on a plane, let alone work. Because of medication, I am able to do all of those things. That, to me, is a much greater impact than marginal! Without medication, I spend hours pacing, doing yoga or stretches, and sleep between 20 minutes and 3 hours each night. My cognitive function declines dramatically, I am unable to write well, spell, remember common words, or do simple tasks. As of yet, we do not know how treatment affects blood pressure, which has been recently associated with WED, no how treatment affects any of the other issues most recently identified as related to WED, such as premature death or increased risk of heart attacks. Time and well-designed studies should determine that.

Dr Spence write that this, “is not one disease.” Given that we do not yet know the biological basis, this statement is a stretch at best. We cannot know this. In listening to patient stories, I do think some patients have both WED and something else, such as small-fiber neuropathy, and it can be hard to tease them apart. More to his point, I also see difference in symptoms that it makes me wonder if it is the same. After much review, I think it is most likely we will eventually find that there are subtypes, much as we now have several types of bipolar disease. But, all are bipolar, just as these are likely all WED. Whether a person experiences it as painful or electrical, it still is relieved with movement. Whether it is experienced for 10 minutes or several hours, it is worse in the evening and when at rest. There are certain characteristics that apply to everyone's experience. The variations may end up being differences in brain chemistry, genetic code, or something else still unidentified.

In the opening paragraph, he makes the claim that WED, as well as several other neurological disorders, “have limited pathological basis, few objective tests, and are based on symptoms the patients report themselves.” And? The earth also used to be flat. Just fifteen years ago, textbooks said that celiac disease was rare. Until recently, we had poor imaging devices and could not see many things in the body that we can see and treat today. There are still many diseases of which the biological basis remains unknown – that does not mean we ignore them until we finally understand them. Or that we allow people to suffer when we have options that have been demonstrated to work. Patient reporting is problematic. At this time, it is one of the only things we have available to us. At some time in the future, we will undoubtedly look back and note how primitive our understanding of this was in the early 21st Century. We will also likely applaud the efforts of those who sought to alleviate the suffering of those who clearly needed our help. My hat is off to those who continue to work to make a difference in the lives of their patients, to those who believe that patients are smarter than we are given credit for, and who continue to act, even when those actions are not yet proven, because by doing so, it benefits someone and makes their quality of life better.

[Rustsmith]

I think that you should post a response. However, I also think that you need to edit the length your proposed reply. As it stands, your reply is longer than the original opinion piece.

My suggestion would be to reduce (not eliminate) the part about the corporate influence and keep the parts that either have not been touched on in previous responses (the pre-pharma history) as well as your personal experiences as both moderator and patient.

[ViewsAskew]

I went a bit too far, lol. I knew I couldn't post all of that. It just made me soooooo mad!

Thanks for the ideas.

[Rustsmith]

I am limiting my "response" to Liking the WED positive responses that have been posted.

I sort of equate this with the Duck Dynasty flap. Everyone is allowed to state their opinion, no matter how ill-informed or outside of mainstream thinking. Only, in this case I feel for his patients. I cannot help but wonder what other areas of care that he is withholding diagnosis and treatments due to his opinions.

[ViewsAskew]

I have long given up changing his mind, lol. I just hope that some doctors who read it may read the opinions and think differently.

You used a key word, to me: opinions. Being a doctor isn't about opinions in many cases. it should be about science.

[Polar Bear]

Views, the content is really good, I am impressed. Yes, it is long... and yet all of it needs said. Good luck with editing.

Rustsmith, I agree with your comment about his patients and other areas of care.

There is no way that he cannnot have patients with WED/RLS.

[cornelia]

The response might be too long because of practical reasons; people might not want to read it and that would be such a shame. But I think it's awesome. I suppose we are going to hear still more from you now that you are not working at least not fulltime Ann?

Actually I should have used the word chairwoman, because she is female and yes I know her quite well. I am proud she responded straightaway. Het christian name is Joke, which is a funny name in English.
Corrie

[ViewsAskew]

I have to mull on it for a few days to figure how to reduce it. I needed to "say" it to myself. Now that it's out of my brain, I can think of how to make it more impactful and readable. Does that make sense?

Sorry about the gender mistake, Corrie! I just assumed - see me blushing (I know better!!!!!).