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» LymeNet Flash » Questions and Discussion » General Support » Symptom Survey for people with Lyme, M.E., CFS or Fibromyalgia

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Author Topic: Symptom Survey for people with Lyme, M.E., CFS or Fibromyalgia
PeterKemp
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If you have any of these physician diagnosed illnesses please take part in the Symptom Checker survey. The Symptom Checker is a professional online resource where you can enter your symptoms and get suggestions of diagnoses. Collecting this data might help to show how symptoms overlap with Lyme, ME, CFS and FM.

The full instructions and survey description are here:
http://counsellingme.com/VIRAS/SymptomRef.html

We are getting feedback that mobile phones cannot do the survey, so a PC is needed. Also, that pop-up blockers might prevent all the options from working, so they might need to be switched off temporarily.

Many Thanks

Posts: 30 | From London | Registered: Jan 2012  |  IP: Logged | Report this post to a Moderator
PeterKemp
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Please take part in the survey. This could influence the next set of Lyme guidelines coming from the UK. They could be reasonable or could be a disaster. Please help.
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Robin123
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Peter, the purpose of what you're asking here is unclear to me. What's the issue with Lyme guidelines being issued by the UK? Are they pretty much tied up with the British equivalent of the CDC/IDSA?

I think so, from what I've heard. I've heard that England doesn't recognize Lyme disease and billionaire John Caudwell is trying to do something about that.

Most of us here already know we have Lyme disease, and many have co-infections too. We don't need to plug our symptoms into a symptom checker for suggestions for diagnoses!

Most of us went through a thousand suggestions for our problems before we found out we had Lyme, so I do not think this is a very good idea! Believe you me, we've heard the suggestions!

Tests are not perfect either, so people can have these dx, these sx, and still not be able to confirm. Some don't confirm Lyme until after some treatment when the body becomes strong enough to mount a defense.

We already know these symptoms overlap, so I don't understand why anymore of this is needed. Most people in the Lyme documentary "Under Our Skin" said so, remarking upon various diagnoses before finding out they had Lyme/co's and receiving some treatment.

I'm sure there's lots of medical literature you or the UK could look at regarding the overlap of all these conditions/diagnoses. You could contact ILADS for some information referals.

For example, Stanford recently did a study of Lyme-presenting symptoms. You can PM me if you're interested in learning more about it.

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PeterKemp
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Dear Robin, as I mentioned to another member, the rationale can be seen via the link provided. What we 'know' and what we have data to support are different things.

8 Years ago the National Institute for Clinical Excellence (NICE) produced guidelines for M.E./CFS. The development group was controlled by the psychiatric lobby.

The same thing is going to happen with the Lyme guidelines unless some action is taken. They already made it clear - Chronic Lyme is going to be diagnosed as CFS. Once it is, the patient has had it.

I don't think that is right and want to do something about it, which is why I want data. Yes, I do want other studies and articles please, but I think the data from this survey could be useful as I am not aware of anyone who has tried an M.E./Lyme symptoms side-by-side comparisson with real-world data.

It takes only 10 - 15 minutes to participate and the results will be going to people who have the power to influence all our lives.

...............................................

(breaking up the post for easier reading for many here)

[ 03-16-2016, 10:55 PM: Message edited by: Robin123 ]

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PeterKemp
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There is something important happening in the UK which could affect everyone in the world with Lyme - as well as the several million with M.E. or CFS.

This is not hyperbole. It has already happened twice with M.E. Firstly with NICE Guidelines and then the PACE Trial. Combined, these 2 practically demolished serious M.E. research and the chances of patients getting treated.

As George Santayana pointed out, those that fail to learn from history are *******s - or words to that effect.

Am I the only one that remembers what has been done to patients due to the IDSA guidelines?

The NICE Guidelines could be worse. They clearly intend that chronic Lyme patients should be stuffed into a psychiatric category - and once there, should stay there. The IDSA guidelines only implied this dreadful abuse of patients.

You think it can't get worse - read some history, or better still, talk to people like me who have lived it and watched the abuse go on and on

Of course, it is important for people to tell each other about their symptoms - where else can they get advice if they cannot afford or are not well enough to travel to see an LLMD? But it changes nothing for those that will still get infected and the millions already infected and dumped in a medical waste-basket.

I am not one to rest on my laurels because there is too much, too wrong about the way that Lyme is managed for anyone to get smug IMO. But if anyone wants to know my credentials for hoping that other patients would help my efforts instead of dismissing them, here are a few:
http://counsellingme.com/VIRAS.html
http://counsellingme.com/microscopy/borreliamicroscopynavigation.html
http://counsellingme.com/Surveyresults/Introduction.html

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duncan
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PeterKemp, I couldn't agree with you more about the risks posed by the NICE guidelines and PACE.

Even in the US there seems to be a synergistic attempt to paint both the Lyme community and the ME/CFS community as suffering from nothing more than the aches and pains of normal life.

Conversion disorders and catastrophizing are bantered about like they are spices for the illness du jour.

Wherever possible, Lyme patients and ME/CFS patients need to be watchful about what is occurring in the other's space, as there may be a common agenda against both at play. More to the point, they should have each other's back.

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PeterKemp
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Hi Duncan. Absolutely! I've seen how this ploy has been used by insurance company doctors to prevent paying out for M.E. for at least 25 years. No doubt they want to do the same for Chronic Lyme.

Instead of people being properly diagnosed and treated, people will be given a 'waste-basket' diagnosis that saves the corporations billions.

They already have 'their' people in place to steer the NICE Guidelines the way they want them.

Please do the survey - it really might help

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Robin123
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Peter, if this might be of any help to you, LymeDisease.org is doing a MyLymeData project - they have collected info from 6,000 Lyme patients, I think at this point, to look for patterns. You could contact them about your project and see whether they have this data or would want to help.

So you're saying they want to diagnose everyone as having M.E./CFS - what about those who get positive tests for Lyme? What about being able to see spirochetes under the microscope?

I'm pming you -

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