International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Should I start a ME/CFS clinic?

Discussion in 'ME/CFS Doctors' started by jpcv, Feb 22, 2018.

  1. jpcv

    jpcv Senior Member

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    SE coast, Brazil
    Hi everyoene here at PR, to make a long story short, I´m 51 years old, a Medical Oncologist and I´ve been sick for almost three years.
    I´m still working, though I had to reduce working hours due to my condition.
    There are no ME clinics or doctors here in the part of the country where I live and I believe that probably not in the whole country.
    I was thinking if it´s Worth to invest in a ME clinic, not only for financial purpouses but also to help patients who are lost, without specialized care and also for the challenge, wich I aprecciate very much.
    I have to fator in time, Money, my health status and so on...
    What do you think?
    Woul you go to a doctor like me, MDwithME, who is studying and learning how to treat PWME?
    No?
    answers, please
     
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  2. andyguitar

    andyguitar Senior Member

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    Hi @jpvc. Sounds like a good idea having a person with your background trying to help PWME. Go for it!!
     
    jpcv likes this.
  3. Sundancer

    Sundancer Senior Member

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    please move to my country ;)
     
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  4. Dechi

    Dechi Senior Member

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    Yes I would, without hesitation. My only concern is your health. Are you really mild ? Do you think you can work full-time, part-time ? Starting a clinic, like any business, is not something easy. Lots of stress and hard work, particularly for the first 2-3 years, where you will have to work tirelessly, without counting your hours, if you want it to work.

    Maybe if you have a very dedicated partner, or even better team of partners, it could work.
     
    Last edited: Feb 22, 2018
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  5. Silencio

    Silencio Senior Member

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    Yes, definitely. People need someone who understands, more than anything. They need a diagnosis, someone to support disability claims and work or study absences. Even with no official treatment, they need someone that will figure it out with them, can understand the variations on the disease and to prescribe drugs for specific symptoms like pain and sleep. They need guidance on lifestyle changes and pacing, using a heart rate monitor, all the stuff we don’t know when we get sick at first. We need clinics like that all over the world..
     
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  6. shannah

    shannah Senior Member

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  7. Dolphin

    Dolphin Senior Member

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    If you are willing to write letters in support of patients receiving disability payments, that would be very useful for patients.
     
  8. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    Most people who get ME would initially go to ME clinic.
    After a while they would realise that the bloody nightmare is permanent and its a fruitless endeavour.
    Most of us been there, but I appreciate the fact that you are doing it for the betterment of the patients.
     
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  9. Hip

    Hip Senior Member

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    That's not true it is a fruitless endeavor: lots of ME/CFS patients do make major improvements via the treatments given by ME/CFS specialist doctors in the US. Only a few days ago I was conversing with a forum member who moved from moderate (housebound) ME/CFS into remission as a result of Dr Lerner's Valcyte treatment.

    And @Diwi9 can certainly testify that Dr Chia's simple oxymatrine treatment recently moved her from severe (bedbound) ME/CFS to moderate (housebound ME/CFS), which is a major improvement.

    We have almost no doctors in the UK offering such treatments, hence you can consider ME/CFS clinics in Britain to be a little fruitless, because they don't do much to improve your health. But the doctors in the US use treatments that often lead to major improvements.



    Most definitely! I think that any doctor with direct personal experience of ME/CFS, either because he has it himself, or because a close family member has the illness, is in a very good position to fully appreciate and understand this disease.

    The illness is often invisible and not understood by others, because people do not seem to appreciate the severity of ME/CFS, unless you have personal experience of it.


    Dr Daniel Dantini in Florida is once such well-known ME/CFS doctor with personal experience of the disease: he developed fibromyalgia many decades ago, but I believe got better with antivirals, and now treats his patients using the same approach.

    Dr John Chia in California was an infectious disease specialist, but got involved in ME/CFS after his son developed the illness from an enterovirus infection.

    Dr Martin Lerner was an infectious disease specialist who became disabled with ME/CFS in the 1970s, and recovered after 10 years, and then dedicated himself to ME/CFS research and treatment.

    Dr Daniel Peterson, as a local doctor in Incline Village, was at the epicenter of the ME/CFS outbreak that occurred there in 1984, and if I remember correctly, he also caught the virus going around, and developed some ME/CFS himself.

    Dr Jamie Deckoff-Jones is a doctor with ME/CFS. She is now retired (I believe because of the ME/CFS), but used to treat ME/CFS patients in spite of the fact that she had ME/CFS.
     
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  10. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    True. Some do make major improvements.
    There is always a handful from the millions.
    Like willy wonkas golden tickets.
     
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  11. pattismith

    pattismith Senior Member

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    Yes you should!

    Let me know if you consider doing IVIG or Photopheresis for your ME patients, I will start to put money aside !
     
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  12. Hip

    Hip Senior Member

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    Did you see this poll on the response rate from Valcyte? 50% of patients trying the proper Valcyte protocol made a major improvement (by the definition of "major" given in the poll).

    That's not a few people in a million, but 1 in 2.
     
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  13. Diwi9

    Diwi9 Senior Member

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    Oxymatrine was the first thing I found that really helped me. At first it made me worse, including at each titration...but I stuck with it. The major effect that I can surmise is reducing flu-like symptoms. I am very fortunate to have been able to receive treatment from a ME/CFS specialist. There was a point when I was unable to read or write...or I could barely write...couldn't really string thoughts together cohesively. I still get all the symptoms I had before, but they are tamped down. They don't reach the amplitude they once did.

    I'm on LDN, POTS medication, and have done two courses of Rifaximin, once with Flagyl. I recently started Valtrex.

    @gregh286 - I would not consider myself having a golden ticket, but I do consider myself lucky that I have responded and improved with treatment...and that I even have access to treatment. Maybe I can improve more...I don't know. At this time, I can spend most of the day out of bed, I can drive again. I look normal for about three hours per day. Looks can be deceptive, however, because I still lack stamina and can easily instigate a crash...but my crashes are not as severe. Mornings are the one time that remain hell. And, being someone who improved years ago and relapsed to a worse state, I realize that any improvements I have may be temporary...there remains the risk of worsening.

    @jpcv - If you are able to help people in Brazil, even a modicum...taking them seriously and believing in their illness and at least trying to give their body a shot to improve...that impact alone would be phenomenal.
     
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  14. CFSTheBear

    CFSTheBear Senior Member

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    Put your own health before any decision to set up business.
     
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  15. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    So why everyone searching for answers when something like valcyte has a 50% hit rate.
    Should we all not be on it?
    Funny i seen a study with similar good results using CBT where 40% improved significantly.

    https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0010809/
     
  16. Hip

    Hip Senior Member

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    Well first of all, Valtrex and Valcyte are expensive, and in the UK are not available on the NHS for ME/CFS patients to my knowledge (Dr Myhill used to use Valtrex, but was told by the GMC that she was not allowed to prescribe this drug to ME/CFS patients, as we are of course the unworthy untouchables of the medical world). But if you have good insurance in the US, then you are covered for these drugs.

    Secondly, if you look at Dr Lerner's clinical trials, he finds Valtrex and Valcyte work best for patients that only have the herpesvirus infections; if you have other co-infections these antivirals still help, but don't produce as good a result. So you have to be in the right subset.

    Thirdly, some patients have difficulty tolerating Valtrex and Valcyte, so that can be a problem.

    So there are some provisos, but these antivirals seem to get results.


    I was myself quite amazed at the Valcyte results in my poll, and am as a consequence currently working on a more sophisticated poll, covering a wider range of ME/CFS treatments, to get more info on the success rate of each treatment. This new poll will be conducted off-site, using proper online survey questionnaire form (which I am creating under the free Google Forms).

    If I can get good evidence that treatments like Valcyte are really working for ME/CFS, and least in a well-defined subset of patients, then I would like to contact the NHS, and make them aware of this.


    Anyway, this is getting a bit off-topic.
     
  17. Sundancer

    Sundancer Senior Member

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    hmm, methinks the people who get Valcyte have been screened thoroughly to ensure that there is viral shit going on. I would probably not get it, because my illness did not start with a viral infection.

    crawley had a very mixed bag of patients in her err 'study' . For real ME her outcome would have been close to zero.

    I mean, when your young the chance that you flip out of it is somewhat larger. When you start a program like that from Crawley at the point in time that you're flipping, you'll get better ( but not because of the program)

    I know, I flipped out of out when 16, I flipped out of it with 39...it's a very peculiar feeling, I hope I'll feel it again. This time over its much worse.

    But the bad thing is that patients with ME are not regularly tested for those things, until maybe much later, when they have seen many doctors and psychs ( and quacks) by then being too ill.
    I find out about it right here and now... after many years of illness

    If you would have stamped on it right away, you're changes are probably large.
     
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  18. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    Yea my onset wasnt viral. Never was flu like...nor swollen glands etc. Certainly valtrex would hold.more promise in viral onsets.
     
  19. Ravn

    Ravn Senior Member

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    A great idea. It would likely (I don't know the situation in Brazil) fill a gap.

    Best to do it in partnership with one or more healthy colleagues so you never have to choose between compromising your own health or letting patients down. A sick doctor is no use to anybody. Hopefully you'll never deteriorate but we all know the unpredictability of this illness.
     
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  20. jesse's mom

    jesse's mom Senior Member

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    I would go to a Dr with ME/CFS then I would worry about your health.
    I say go for it if you have plenty of support both at the new clinic and at home.
    I wish you well and think It is very kind of you to try something like this.
     
    jpcv likes this.

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