Discussion in 'General ME/CFS News' started by starryeyes, Dec 24, 2009.
This is the main one people are talking about:
No-one even had a name for what Diana Longden suffered from. She was never diagnosed in her lifetime. Only since she died has what she had been recognised as ME. By the time I fell ill, everyone I knew had heard of it and clearly some doctors were up to date on its management. That was a huge change from the early Seventies. Then along came this film, made by the BBC and shown in prime time on national television, showing a complete contrast to the way my friends and I had been treated, so of course I think things had changed. But that doesn't mean I think things are perfect.
Like everyone here, I want to see ME/CFS recognised for what it is by every doctor, and I want all patients to be treated as well as I have been. Heck, even self-preservation demands that of me as we hope to move back to Europe and I am as terrified of not being able to find a good doctor over there as I was when we moved over here. But the fact remains that there are some good doctors today, plus a lot of educational material so that we have learned to better manage our own illness. Diana Longden had the benefit of neither and, as the film portrays, did exactly the opposite of what she needed to do because that's what she thought she had to do. If she'd had the advantage of a diagnosis, access to the internet, books on the topic and had been able to receive Action For ME's monthly magazine, she might still have been alive today. So yes, things did change. BUT...
...from what I am reading, it looks as if there has been a huge step backwards in the UK while there has not been much of a step forward in the USA, which is surely why we all come to this site.
The situation for ME and CFS is dire today and much worse than it has ever been. XMRV offers some hope but there are NO good doctors who can treat ME or CFS in the UK. The few who exist have their hands tied.
If exercise makes you feel better or gives you quality of life without relapse that is great; we all want that but we can't all get it!
I don't have to think about how much exercise I am taking, even minimal as I have learnt that if I can do it I am, if I have to think about it I am not well enough. I also make the personal decision to overexert and take the consequences if I feel it is justified.
The risk of becoming severely disabled or even dying as a result of an exercise programme is real. There is no test beforehand which can show who will suffer this - the possibility of this happening is not acknowledged by the weasels and is not explained to people attending the clinics - so I would never promote exercise as a treatment. I will not be the cause of someone spending the rest of their life like that so I will fight the promotion of exercise, especially graded exercise, as a treatment.
If you have got away with it fine, as I said many people took vioxx with no side effects, yet they banned it for everyone as they couldn't tell who would suffer.
The Oxford guidelines:
Here are the symptoms:
As you can see, the only required symptoms are physical and mental fatigue. They add that other symptoms may be present, but they don't require them.
Notice the examples they give of optional symptoms. They don't include any of the CFS symptoms that could differentiate from depression, such as orthostatic Intolerance and post exertion malaise.
Now, let's look at how they describe mental fatigue.
Does this sound like cognitive problems to you? Is it your experience that hallmark signs of CFS are lack of motivation and alertness? This part appears to set the stage for a mood disorder.
And here is their explanation of physical fatigue
My reason how they describe physical fatigue is to show that they don't use the word "fatigue" to describe a broad range of symptoms.
So what do we have so far. Well, based on this all a patient needs is physical fatigue, lack of motivation, and lack of alertness.
But they add one subtype of CFS
Here they offer a subset that is based on an infectious trigger. The trigger must be demonstrated with laboratory tests. This seems like a good thing. But because they continue to only require fatigue, the research remains invalid. And do they really think that CBT and exercise can cure infections. Something is not right here.
Poet: Is there any part of my post in which I recommend that we abandon it?
I think hvs' point is so well taken here that it bears repeating. We are not simply asking that the CAA give *us* better advice, in the service of our personal health (though that would be nice). We are asking that the CAA be our representative against the Wesselys of the world, who are (horrifyingly) in a position to implement systems that will harm us. I wish we could feel more confident that that was happening.
Nope. Sounds like my normal self in the middle of a wet and cloudy English February. Cognitive problems are like when my husband recently asked me to choose between peas and corn. I knew something was required of me but since I didn't really care which, my brain simply did not seem to understand the concept of choosing. Or like when the TV was on and my husband was telling me something. I told him I was "shutting down" but he carried on talking. At that point, the furniture melted away before my eyes and I had to lie down to recuperate. Still have no clue what he was talking about. Oh no, that was not a cognitive problem, was it? That was overload. No mention of that in their list of symptoms?
YAY! I qualify for something.
I wonder what you mean by "treat"? I've not had a doctor who treats ME/CFS. Mine have treated the symptoms individually and conservatively.
Problem is, so do a lot of people who don't have CFS. They leave out so many CFS symptoms the studies become diluted with people who don't have CFS.
Compare to Fukuda definition, which isn't even considered that great, but is widely used. It requires fatigue plus "four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours."
And I'm not saying we should use Fukuda. But at least it has several things in common with CFS.
That cracked me up. Well said. Thanks!
I know. It's appalling. I qualify under Fukuda and Canadian, so I would NOT seriously consider it a badge of ME/CFS honor to fit into the world-wide Oxford club.
Good Morning Valia,
Like you, the only 'treatment' for me is GET/CBT - GPs are a major health hazard here in the U.K. and I avoid them if I can. It is no wonder that doctor involvement is recorded (somewhere ) as the third leading cause of death.
I find there is a blanket refusal to investigate anything - even when the symptoms indicate that another and potentially serious condition has developed. I am in that position now with heart issues (confirmed by a major hospital following an emergency admission), but my GP has failed/refused to implement the cardiac function tests as instructed by the hospital. The medical negligence we experience is unbelievable. The medical profession here seem to suffer from a totally irrational belief system: a diagnosis of M.E. forever excludes any physical cause for any symptom - ever. In other words: people with M.E. are immortal.
Hope you are having a better day, Valia.
P.S. Yes, aren't the folk here intelligent and so knowledgeable. I am learning an enormous amount from these posts. Perhaps there is a correlation between high intelligence and M.E .
Is it possible for you to return to your cardiologist and let him know what is happening? One of my daughters had a bad experience and was able to go not only above the GP's head, but right to the top guy on another issue. And she is just bolshi enough to do it!
This why I've advised my relative to keep seeing the various specialists and let them treat her for each issue as a separate disease, rather than connect the dots for her GP and end up with an ME diagnosis. If I were just starting out and was in the UK, I would guard the ME suspicion like a state secret until all this nonsense passes - hopefully with XMRV panning out on both sides of the Pond. What you are going through is a travesty. Talk about going backwards.
P.S. Yes, aren't the folk here intelligent and so knowledgeable. I am learning an enormous amount from these posts. Perhaps there is a correlation between high intelligence and M.E .[/QUOTE]
Andrew-- thank you for posting the Oxford and Fukuda definitions. I think they really illustrate how important the Canadian Definition of CFS is for diagnosing people.
I wish we could too.
I haven't yet been able to try to go over my GP's head as have been too unwell and breathless for the fight. I haven't got a cardiologist because due to an admin error on the hospital computer, I have been left off their system and have to start from scratch i.e. have to start again via my GP. Have been waiting for an improvement in health before girding my loins for battle. I am seriously wondering whether it is worth wasting precious energy in this way because a cardiologist is very unlikely to be M.E. - friendly and the process could be counter-productive. I am still planning my course of action.
Sure. There are plenty of non-quack doctors who treat CFS: it's just that, without knowing the root of the disease, they've had to put it into remission by attacking secondary infections and modulating the immune system. It's treated with antivirals, antibiotics, and immune modulators, as necessary.
Alas, for some poor folks--usually those who've been ill the longest--the damage to the body is so extensive that treatment is incredibly difficult. And, alas, measuring the immune malfunction and locating the smoldering infections takes extensive and expensive testing. But that does not mean that CFS is untreatable.
I've managed to read more of the CAA document. I think they don't make the warning labels large enough. In one of the side bars I get all the way down to the bottom before it says
This very brief note gives good advice, but it's presented as an aside at the end of the article, and it's only applied to the last stage of exercise. I bet most doctors won't even read that far. And if they do, it will likely not sink in. And the reason it doesn't sink in is because the "no pain, no gain" attitude is so established.
This issue of PEM is killing us out there. We don't need any more doctor articles that present themselves as expert advice while understating its importance. The cautions about avoiding PEM need to be as prominent as a good warning label. It needs to be at the top and set off in some way to make it seem extra important. And then they need to explain about balancing exercise with all activities, be they physical or mental. In fact, why don't they have Bruce Campbell write a side bar for them, or simply ask for one he has already written. And then they can add advisements in other parts of their PDF that point back to it.
As for Nancy Klimas, it looks like she has some physical therapists she works with. They are probably good, and know how to deal with CFS. But I'm willing to bet that any doctor who reads only the Klimas section will come away with a "no pain, no gain" message. If CAA wants to include this, they need to add some prominent reminders that not all patients can do this, and that the ones who can will crash if they are not given careful guidance. And they need to be told what that guidance should be.
That's just what is needed, Andrew.
I'm not sure what you are advocating then. If we were to strike down exercise therapy from CAA's pamphlet for clinicians, isn't that same as abandoning it? How about if we leave it on with a note about possible misinterpretation/misuse by quacks who still think CFS is psychiatric disorder? Along with strong warning about post-exertional malaise and some/many patients do worse on it.
I don't think that analogy works. There are many other safe alternatives to Vioxx. For CFS patients, the only alternative is to languish, and therefore it is more of a matter of risk/benefit like a highly toxic chemotherapy. (Some patients do refuse chemotherapy in favor of death.) I'd look for a way to minimize the risk rather than banning it.
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