CFS/ME article in BBC News boooooo

Discussion in 'Fibromyalgia Main Forum' started by Roseblossom, Sep 30, 2006.

  1. Roseblossom

    Roseblossom Member

    There's an article in Friday's Health section on the news.BBC.com website entitled Talking Therapy Treats "Fatigue".

    The first sentence in the article states:
    "People with chronic fatigue should be offered talking therapy and exercise therapy, research suggests."

    So disappointing!

    I wrote to BBC by clicking on their Contact Us link at the bottom of the site. Here's my letter:

    Greetings,

    I was excited when I spotted the article about Chronic Fatigue Syndrome, also known as Myalgic Encephalomylitis,(CFS/ME) on the BBC News website Friday.

    I have always considered BBC News to be one of the more reliable news sources.

    Unfortunately, the article was very disappointing, as it was simply another National Health Service press release trotted out to perpetuate the NHS' & Medical Research Council's stubborn adherence to the same mythical "talk therapy/ exercise therapy" for CFS/ME.

    If the author of this article had done a little research, BBC readers could be learning about the advances made in the research of CFS/ME, showing genetic, endocrinological, and neurological causes of this illness.

    Yes, therapy can help a person with this illness to cope with becoming disabled and the loss of their energy and life.

    No, exercise will not help. One of the worst symptoms of CFS/ME is Post-Exertional Malaise, the disabling flare-up of symptoms that follows physical exertion and mental stress.

    I suggest you have your journalists do some investigating as to why the NHS & the Medical Research Council wishes to continue promoting ineffective treatments instead of directing funds toward more promising research.

    There are Medical Research Council CFS/ME clinics in six different centres across the U.K - all funded by the U.K. taxpayer.

    Who's invested in, and profiting from, these clinics that perpetuate outdated ineffective and even damaging treatment?

    Thank you for your attention to this matter.

    Sincerely,

    [This Message was Edited on 10/01/2006]
  2. Smiffy

    Smiffy Member

    What a wonderful letter you wrote Rose, but what a shame that you had to write it. The BBC really should not be trotting out this tired old theory that we'll all get better if we just exercise more. ITV used to really annoy me because trevor Macdonald always called M.E. 'yuppie flu'.

    If only we could give them all our symptoms just for 24 hours!
  3. Marta608

    Marta608 Member

    And you're right, very discouraging article.

    Marta
  4. karinaxx

    karinaxx New Member

    the bbc is a big thing, i am really disapointed that they did not do their home work properly.
    maybe, because it is the bbc, we should all write and send them more recent information. We cant let a chance like this slip, with such an important network.
    can we sign the letter and send them better up to date research info, which we all agree on?
    love karina
  5. minkanyrose

    minkanyrose New Member

    thank you for standing up for us.
  6. Cromwell

    Cromwell New Member

    I am sorry they did this one program. I suppose it is another view and some people even here do swear by talk therapy and exercise in moderation.

    FYI: Please go to BBC 4 homepage and type fibromyalgia into the search space. Five pages of programs, reports and links DO come up. Lots of info on support groups too.

    There is no such thing here in the USA BTW, so good for the BBC for actually addressing these things, which never seem to get a mention here in the USA.


    Love Anne
  7. Callum

    Callum New Member

    We so often get told that what we have is just another form of depression, it's all in our heads, we need to keep active.

    I did read the headline differently, and I think I need to read the article entirely, because then I might be as angry and indignant as yourself. Certainly, exercise and talk therapy is not going to "cure" any of us. Our illnesses were caused by either viral or environmental agents.

    However, I have to say that I have my quality of life back because of both of those things! I still have the post-exertional malaise, but my rheumy insist that I slowly build up my cardio endurance, and after months of being angry with him, I've gone from 30 seconds on the exercycle to almost ten minutes. Now, that has taken MONTHS, but my energy level is so much better because of that, plus the weight training I do.

    As for talk therapy - cognitive behavioral therapy has done much more for me than helping me "cope with being disabled." It has helped me eliminate those behavior patterns that interferred with me getting well. Doing to much when I was feeling great only to experience a relapse. Freaking out because I felt a new symptom. Beating myself up because I was experiencing a flare-up.

    Since I started this work, my flare-ups are much less frequent, and last for a much shorter duration. My quality of life has greatly improved.

    If this article was suggesting that this was going to "cure" us, and that we needed to hope right on the stairmasters and get going (which I'm assuming it probably did, otherwise you would not have been as upset as you were), I am so glad you defended us so eloquently.

    However, I do think that, perhaps, it would be a good thing if people who are struggling with achieving a quality of life with the DD were encouraged to explore both of these options, under the care of a sympathetic doctor, as long as it was understood that this wasn't a cure, but an aide.

    Sincerely,
    Callum
  8. Roseblossom

    Roseblossom Member

    Smiffy, Marta - I know! I was so surprised to see this; especially since we've lately been seeing so many good news stories/consciousness raising in Canada and the U.S.

    Many of the Brits here have commented that the U.K. National Health Service is way behind, but seeing stuff like this in my beloved international BBC newspaper is so discouraging.

    Karinaxx - I agree, It'd be good if everyone who could would shoot them a quick note in their "Contact Us" feature at the bottom of their website page.

    Minkanyrose - my pleasure :) I happened to be unable to sleep so I got up to glance at the news online, and boom.

    Cromwell - thanks for the tip about the Search feature on the tv/radio BBC website. I typed "CFS" into the Search feature and much more helpful information came up.

    Made me feel a bit reassured, at least, but I hope their Newspaper site will get themselves educated.

    Callum - I have no quibble with the article saying these things are helpful - it's important to keep our muscles in the healthiest shape possible; and Cognitive Therapy is extremely beneficial for helping us learn to accept and cope with our illness, and even helps repair our neurotransmitters.

    But that "graded exercise" theory does not seem to be successful with CFS...with Fibromyalgia, yes, sometimes. I'm glad you are able to exercise. For me, my exercise program does not result in linear improvement - it remains a matter of being able to move in my pool one day, and not even being able to leave my bed another day.

    If you do some research on the Medical Research Council's CFS/ME clinics across the U.K, you'll see that a very narrow & unrealistic exercise treatment option is being pushed by them. Tansy's articles here regarding this issue are eye-opening.

    Everybody - thank you again for replying so positively! I'm glad I shared this with you.

    Roseblossom
  9. Callum

    Callum New Member

    I have to say that I am totally ignorant as to the specifics of the gradation exercise program of which you speak.

    I know when my Rheumy suggested that I start out at a minute and build up, I had a few choice words for him. I'd had this disease for twelve years! I knew what any cardio did to me, and it wasn't good. I had a certain quality of life back, and I didn't want to screw it up by doing things my body couldn't handle.

    He kept pushing, and told me to start and 10 seconds if I needed to. He compared it to certain drugs - how some drugs you need to build up very, very gradually for you to handle the maximum dose. I still didn't buy it, but I wanted him off my back.

    It has been an excruciatingly long process to build up from the 10 seconds to the 8 minutes, 45 seconds that I do now. Every time I increased too much, I would feel "dry" afterwards, and have a flare by the next day. and even at 8:45, if I were to go for 10 minutes tomorrow, there'd be heck to pay.

    I'm reticent to tell my rheumy that he was right, because I do believe it is a case by case decision. I think if I had tried this four years ago, it wouldn't have worked. I think I was too sick.

    When I first got sick 13 years ago, I was doing an hour a day on the stairmaster. I never thought that 8 minutes and 45 seconds would seem like such a victory.

    Best Regards,
    Callum
  10. sascha

    sascha Member

    it felt good just reading it.

    'i don't feel good from my CFIDS/ME- let's start a jogging program! yes! that will help so much!'

    i always wonder if these smug people contracted CFIDS/ME, what their response would be then- i wonder if there is any such data somewhere...

    thanks for your effective response to their article- Sascha

  11. kholmes

    kholmes New Member

    Very well-written. Good for you for writing to the BBC!

    The mere words "Chronic Fatigue" instead of "Chronic Fatigue Syndrome" throw up a red flag in the first sentence of the BBC article. This isn't just hair-splitting; chronic fatigue is a result of thousands of different health problems, while Chronic Fatigue Syndrome is a specific syndrome. If they do mean to write about ME/CFS, getting the name wrong in the first sentence (and using lower case letters) is not a good sign.

    Kholmes

    [This Message was Edited on 10/01/2006]
  12. Roseblossom

    Roseblossom Member

    Callum - 8 minutes and 45 seconds is a victory; I do know how that feels on my good days. Heck, even 8 minutes and 44 seconds ;)

    I believe all movement is so very helpful for us. Especially since any exercise starts that cascade of delicious neurotransmitters.

    Battleweary, Sascha and Kholmes - I appreciate your kind words, thank you :)

    Yeah, Kholmes - egg-zactly. And when I saw that they put "fatigue" not only in lower case, but with "quote" marks around it(!)I started to get that sinking feeling. Er...dear BBC, you are referring to an illness here; a real one with a real name.

    LOL Sascha - Hey, I'm so weak & faint I can't even get out of bed...tennis anyone?! *grin*

    Best to you all,

    Roseblossom
  13. well done,and said rose.i so agree with what you have said.i went to one of their excersize courses,and after each one,was totally bedbound for three days.when i complained about how the excersizes were effecting my ME, i was told...well we told you at the begining of the course that you could expect to be drained taking into account you have a chronic fatigue illness.

    they still bullied me into doing the excersizes though.then at the end of the course its...goodbye,oohhh and ive told the social about you completing the course...a few weeks later my dissability money is stopped,then and there.

    throwing me into debt,and despair.

    fran
  14. Roseblossom

    Roseblossom Member

    That is indeed discouraging! So their theory is that now you've taken their magic course you're all well and no longer disabled, eh?

    Pfffft, and bah!

    I hope you can appeal that decision; perhaps letting them know that since the course you're worse than ever.

    Best,

    Roseblossom
  15. roseblossom,i did appeal and lost the case.the reason they gave for not reinstating my dissability benefit was.that in their opinion i was fibbing/lying about how my illness effects every aspect of being able to walk properly/see properly/being dissabled as in poor mobility,and they didnt even beleave my husband,when he told them that he helps me out doors because of my severe fibro fog brain.and that he helps me to wash my own body.

    i do think that i have a arthritis that comes along with suffering from psoriasis life long.but since the doctors wrote on my medical records that i have fibromyalgia and ME chronic fatigue syndrome.they just refuse to enter any new condition on my medical records,and just say,its the fibro.

    i am at present in a sort of flare with the spinal stiffness,im limited to how much i can bend.the pain is below the bra line,and all the way down my back.

    my nails are always affected by the psoriasis when this spine stiffness comes,then when the stiffness goes away,the nails get better too,it takes a week to recover,sometimes two,then the circle begins again.so i do think the two are connected.the hospital told me they think i have the psoriasis arthritis,but didnt enter it on my records,so i get no help with my symptoms.and get treated as just another fibro sufferer who seems to be paranoid.

    isnt it sad that we should be treated like this,and not given anything for our pain.i blame the hospital for not writing in my records that i have psoriasis arthritis,as well as the fibro/ME.and because the evidence isnt there,my attending this excersize course was enough to lose me my dissability benefit.

    no one will test me for any new illness,because in their opinion,its all down to the fibro.

    kind regards
    fran