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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
Discuss the article on the Forums.

Positive article in the Times about ME

Discussion in 'General ME/CFS News' started by thefreeprisoner, Jan 25, 2010.

  1. Nina

    Nina Senior Member

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    Thanks, Rachel! I hadn't seen this before.

    I think we should leave some comments expressing our gratitude and encouraging them to do more on the subject. It works the other way round, too. Maybe we will soon be labelled the "cheerleaders of health" then? :)
     
  2. Good plan! "cheerleaders of health" - what a great phrase.

    Have commented to that effect...

    Rachel xx
     
  3. JAS

    JAS

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    Fiinally a well balanced article, makes such a refreshing read!!!
     
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I thought it was good. I noticed it was real heavy on quoting those saying it is problems in body, not psychological. But did you notice those who do believe it is psychological didn't want to be quoted because of fear. Well, if nothing else, you seem to be influencing who gets quoted in articles.

    But realize also that this reflects that many doctors, researchers, etc. believe it is psychological but keep that to themselves. How many have we seen that was afraid to tell us what they thought, knowing it will possibly make the patient angry.

    I am laughing because I had such a doctor who was resistant to tell me what he thought. I flat out asked him. He said he doesn't believe CFS or FM is organic. He said it is a "different kind of depression." But he avoided saying that in the beginning. I had to flat out ask him.

    So remember that folks. It is their little secret that they only talk to each other about when they go to lunch, see each other at parties or at conferences.

    I also notice that he said researchers avoid it also. Sad for us, but certainly understandable, considering DeFreitas and other stories. Between the bias and the fear, we have more strikes against us beyond just the complexity of the illness itself, when it comes to research.

    Tina
     
  5. Katie

    Katie Guest

    I've written a thank you, it has to be moderated first but I expect it to be posted. I hope to whatever deities might be floating about that the press start to ask questions about this disease, the funding, the treatment, the people, the powers that be and the hope of gene expression and XMRV. We're just waiting for the light to be shone on us and our plight and pluck acknowledged. Nice work Penny Wark.
     
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

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    oh, and on the golf course.

    Tina
     
  7. muffin

    muffin Senior Member

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    USA!
    I told my husband yesterday that IF today's Rheumatology doctor says anything negative about CFIDS, as in "I don't believe in CFIDS", then I am prepared to look at him and say, "I don't believe in you", get up and walk out. Then ensure that the front desk understands that I am going to contact the insurance company and tell them NOT to pay any bills coming from this doctor. My sister was so enraged by an office visit where there was NOT a doctor in the office but rather a Physician's Assistant (PA, getting too common in the US), so she told the front desk she would not pay and that she would (and did) call the insurance company and told them not to pay since there was no doctor. My husband got a little nervous by this possible scene and tried to get me to remember that I have waited for nearly a year to get to a Rheum since I do have arthritis symptoms on top of the CFIDS/FM so I had better be quiet and not try to fight everyone all the time about CFIDS.

    I have waited almost a year to get into a Rheum in this area where we have a very high percetntage of elderly (over 70), but my CFIDS/FM is so much a part of my body's disease process that a Rheum must understand how CFIDS/FM interact and play upon the protocol, medications given, etc. Many of the meds used for RA dampen/decrease the body's immune system. Well, my immune system burned itself out several years after being super UP-regulated and now I get everything (infections/viruses) out there since NO real immune system. So, I can't be put on the typical Arthritis meds. Doesn't leave much in the med area for me.

    And I am wandering again...No longer do I put up with any comments from anyone about CFIDS not being real or being part of a depression, etc. I'm quick with the "I have CFIDS and it is very real and affects the brain, multi-systems, etc." and then I get the open mouth response from the other person. I just won't be demeaned anymore from anyone - and esp. doctors. Again, remember WE pay those doctors - they WORK FOR US. And in the UK, your taxes pay for your doctors, so don't let them get away with the nasty, demeaning comments. Stinks we must correct and educated - get's old fast. But, IF we don't undo the damage by Reeves/Wessely then HOW will that damage be undone? Amazes me just how stupid doctors are that they listen to the CDC and don't bother to read the 6,000 plus research documents out there or even look at a CFIDS/ME person.
     
  8. muffin

    muffin Senior Member

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    Must counter negative comments on CFIDS/ME by everyone

    I told my husband yesterday that IF today's Rheumatology doctor says anything negative about CFIDS, as in "I don't believe in CFIDS", then I am prepared to look at him and say, "I don't believe in you", get up and walk out. Then ensure that the front desk understands that I am going to contact the insurance company and tell them NOT to pay any bills coming from this doctor. My sister was so enraged by an office visit where there was NOT a doctor in the office but rather a Physician's Assistant (PA, getting too common in the US), so she told the front desk she would not pay and that she would (and did) call the insurance company and told them not to pay since there was no doctor. My husband got a little nervous by this possible scene and tried to get me to remember that I have waited for nearly a year to get to a Rheum since I do have arthritis symptoms on top of the CFIDS/FM so I had better be quiet and not try to fight everyone all the time about CFIDS.

    I have waited almost a year to get into a Rheum in this area where we have a very high percetntage of elderly (over 70), but my CFIDS/FM is so much a part of my body's disease process that a Rheum must understand how CFIDS/FM interact and play upon the protocol, medications given, etc. Many of the meds used for RA dampen/decrease the body's immune system. Well, my immune system burned itself out several years after being super UP-regulated and now I get everything (infections/viruses) out there since NO real immune system. So, I can't be put on the typical Arthritis meds. Doesn't leave much in the med area for me.

    And I am wandering again...No longer do I put up with any comments from anyone about CFIDS not being real or being part of a depression, etc. I'm quick with the "I have CFIDS and it is very real and affects the brain, multi-systems, etc." and then I get the open mouth response from the other person. I just won't be demeaned anymore from anyone - and esp. doctors. Again, remember WE pay those doctors - they WORK FOR US. And in the UK, your taxes pay for your doctors, so don't let them get away with the nasty, demeaning comments. Stinks we must correct and educated - get's old fast. But, IF we don't undo the damage by Reeves/Wessely then HOW will that damage be undone? Amazes me just how stupid doctors are that they listen to the CDC and don't bother to read the 6,000 plus research documents out there or even look at a CFIDS/ME person.
     
  9. Molly29

    Molly29

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    Thank you so much Rachel and Maarten Maartensz
    Love the positive aspects of each of you! Also so appreciated you Rachel for your hasty transcription
    of the DrM and WPI lecture! Truly thank you! MM I enjoyed your piece on your website.
    I can send it to my many Dutch friends to read in their tongue...who knows they might just swallow it!
    Molly
     
  10. Aw, thanks Molly. It's so wonderful to be appreciated, and your comments were very encouraging to me.
    I hope that my (small amount of not very difficult) work can benefit a lot of people.

    -Rachel xx
     
  11. Just noticed - they didn't allow my comment!! They deleted it! Wonder why?? It was political yes but no more than all the others...

    Rachel xx
     
  12. Molly29

    Molly29

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    OOOOooooo Rachel,
    Better watch out!
    The "Political Police" are gonna getcha...LOL!
    You are SO appreciated!
    Molly
     
  13. JAS

    JAS

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    They didn't allow mine either! I did mention that the UK study did not replicate the developed techniques used by the WPI....may have had something to do with it! x
     
  14. Jenny

    Jenny Senior Member

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    London
  15. Nina

    Nina Senior Member

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    I hate it how they twist our words in our mouths and use them against us:

    "The most striking thing about the ME lobbyist is their insistence that the most effective treatment is that non-traditional, alternative medication like homeopathy, kinaesology, light therapy."

    Now whoever said that?? The reason why we go for these therapies is mostly that we are not offered anything else!! Rrrrrr.....
     
  16. sproggle

    sproggle Jan

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    Teesside, England UK
    Just seen my response to the article has been allowed on site:

    Janet Laverick wrote:
    It's great to finally see such an accurate well rounded article (without any of the usual underminding insinuations regarding cause that are so often included) in the main stream press concerning ME.
    Thank you and more in future please!

    I wanted to show support for this article but the dig in the middle about the usual tripe they print was also very neccesary!! Pleased it was "allowed"
     
  17. dipic

    dipic Senior Member

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    Wow, either the sad sack voted his reccomendations up to 100 or there are a bunch of ignorant fools reading the comments. I have a feeling it's the former.
     
  18. Gerwyn

    Gerwyn Guest

    I,ve added my history and my views see if it gets accepted
     
  19. Gerwyn

    Gerwyn Guest

    Hi---i read your piece i,ve written a similar but more cons=densed form from a personal perspective i haven,t actually mentioned witch Doctors but i,ve got close! I,ve submitted it to the times and mail--we will see if it is accepted----last year there was a judicial review against the nice guidelines which failed primarily because our campaigners did not understand the law and the poor lawyer didn,t understand the science so he was arguing from the wrong perspective---the irrationality lay in what NICE did,t do but the JUdge was not made aware of it.I say this in support of your argument that we need to combine expertise and not work in silos--speak to you soon--Gerwyn
     

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