Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 24, 2012.
View the Post on the Blog
Thank you for an excellent critique of the Primer and the 't'oolkit. This is very useful and demonstrates what helpful material actually is - as compared to material that does not help people with ME/CFS (or others).
Thanks Denise - I was astonished at how sparse the CDC Toolkit was...The conception the authors of the Toolkit (probably CDC staff) and the authors of the Treatment Primer (ME/CFS physicians) have of ME/CFS treatment is miles apart....It almost couldn't be wider.
It takes a just quick look at major health websites on the web to see how much impact the Toolkit has had on doctor's views of this disorder.... This document can only lead to undercare of ME/CFS patients and the CDC should remove it immediately.
"This document can only lead to undercare of ME/CFS patients and the CDC should remove it immediately." It will take well reasoned arguments to do that. Let's work on getting it removed (asap).
A very nice job, Cort! The primer is definitely a big improvement over the tool kit. As I told the primer committee at the Ottawa conference, I'm hopeful that a subsequent revision of the primer will include methylation treatment. As you reported, the treatment section of the first edition of the primer is very much dominated by drugs to treat symptoms. Methylation treatment is directed at root causes, is much less expensive, doesn't require prescriptions, and is being shown effective every day by the many people who are trying it, in large part due to reading the reports from others on Phoenix Rising.
I agree Rich...I think Methylation information should be available to everyone who has this disorder...there aren't many low cost options for people with ME/CFS...
It might be useful to note that the CDC does not actually define post-exertional malaise. This is important because, as far as we can tell, the term is being misused in some research studies.
We think there are several sensations which could be so described, some of which are very unlike what we experience. In fact, some researchers equate it with feeling tired after exercise, which is normal.
Looks really good. Is this primer going to be introduced to other countries as well?
I think there is some discussion about getting it translated into Spanish.
The CDC and their info is responsible for just how badly ME/CFS patients have been treated worldwide!!! The CDC has never taken this illness truely seriously.
From your summary of the primer. I do think they still need to go A LOT further in some things even if it is only a primer as a primer needs to be ALSO suitable for those who are more severe cases and have many other symptoms too from this illness which actually need treatment.
Too few symptoms treatment are focused on in the primer and more severe ME/CFS cases have FAR MORE then just a few symptoms to try to treat. (so I feel like once again the more severe ME/CFS group isnt being catered for at all in this primer). As 25% of ME/CFS cases are of this group, the primer should also have suitable recommendations for these too and not just focus on the other 75% of the ME/CFS population. It is still playing this illness down by just mentioning a few symptoms and their recommended treatment.. but what of the REST of the symptoms many of us get and have to be treated for????. This primer still has HUGE holes in it for many of us and hence isnt a suitable primer for us as its IGNORING so many things.
eg there are no recommended drugs (according to this summary) on the primer for those who need to take drugs for ME/CFS nausea (I take metoclophamide for that).
by the fluid recommended is the primer just telling one to drink more? or does it go as far as recommend saline IV for those who have severe POTS? Without that recommendation.. the more severely affected group once again have been ignored.
Dietry advice is often not enough for the more severe patient group with this issue. There needs to be more advice.
I preach over and over that there needs to be specialists being trained in ME. No normal doctor even with this primer would be capable of taking on a severe ME/CFS case as this primer wouldnt even bring them close to being able to help the patient.
A patient shouldnt have to be going to 6 or so different specialists in different fields (be it gasto/bowel specialists or whatever).. to deal with all the ME/CFS stuff, all cause there is no specialists being trained in our disorder and no good primer to give doctors advice on treating, if it is doctors who are being expected to look after us.
This primer IS NOT suitable for those in the 25% group who it just dont cover well at all. We do not only have a FEW different symptoms to be treated (what of all the rest?) and often our symptoms are more severe then this primer is catering for eg saline IVs may be needed rather then just Florinef. (Florinef does help many of us and hence Im very happy to see it mentioned, but it just isnt enough in my case. I collapsed onto roadway yesterday while trying to cross a road, due to the POTS and couldnt stand back up again, so cars ended up being held up, thank God my support person was with me to stop cars from hitting me..she had to stop the cars).
While the degree of treatment many of us do need is being played down.. this whole sitution is bad and wrong. The lack of treatment advice.. is endangering my life and others!! and what happened to me yesterday is an example of that. (things are still unsafe for me even when out with support person.. what I need is more treatment. Florinef isnt enough!! Why isnt IV saline being mentioned in the primer? Many of the ME/CFS specialists are using it for their more severe cases and it is known to greatly help many in this group).
Why is this illness played down still? .. this primer is still doing that and not catering for a large group of us and unfortunately it is the ones who is needing treatments the most and who are the hardest group for the doctors to treat, who it is letting down.
Yes it is an improvement.. but it does need to be made suitable across the illness range.
Trivilizing this illness is actually endangering lives in various ways be it from severe patients who cant get treatment (primers ignoring symptoms dont help that) and hence then go on to commit suicide due to not being able to handle the symptoms anymore .....
to what happened to me yesterday, I could of been run over yesterday when collapsed on the road as no one has yet tried saline IV with me my ME/CFS POTS is not well uncontrolled.
I plead with those who made this primer to change it, so it caters for the whole range of this illness.
I agree with Rich, there was not enough discussion of the methionine metabolism, either the methylation or thiol side, and we know that is a big problem area in CFS. I was particularly disappointed to see they recommended folic acid and not methylfolate. But all in all, this is a big step forward.
I know these meds can be prescribed off label but it would be good if there was a push for the meds indicated to be approved for use in cfs/me. This would also help give cfs/me more credibility to.
I imagine the CDC toolkit have been influenced by what happens in the UK and the clinics there, where generally time spent with a physician is minimal e.g. one 10-minute appointment. After that, it's time with allied healthcare professionals who can't request tests or prescribe many if any drugs.
IMO the primer is a vast improvement over the "toolkit". During the CFSAC meeting in June, there was a lot of discussion about the CDC website and a lot of pressure to get rid of the toolkit and replace it with the primer.
tania - I hear you, but this primer is intended for use by general practitioners trying to diagnose and provide primary care to ME/CFS patients. A lot more needs to be done for the more seriously ill, but hopefully the primer would lead to better and earlier diagnosis for many and a hope of proper treatment.
Existential dread Cort - where did that one come in. Great Primer for all those both feet firmly on the ground though. So many issues addressed.
Can I ask how this will/might be affected by the Physicians' Guide to the 'International Consensus for ME'? If it ever is published? Will it lessen the impact/confuse the situation?
Be nice if a consensus extended to those who were already in production of this Primer I think.
I truely hope that Physicians Guide to the International Consensus for ME goes ahead...there are still way too many gaps in the ME/CFS primer to cover many "ME" patients esp the ones who have a large range of symptoms and extreme symptoms.
I think one needs to be done to focus on ME.
The ME/CFS orgs (when these orgs are catering for both ME and CFS patients) tend to think that general practitoners (normal doctors) can handle ME/CFS (that came up at the last big talks) ... thing is they often just cant handle ME cases!!. Hence why I truely think the ME stuff needs to be separate with separate guides, from what I can see a ME/CFS one just isnt going to cover this patient group well.
Sure throw ME and with CFS together if that is what people and orgs wish to do (I personally dont agree but wouldnt be against if if it meant I was getting better treatment, if it was helpful).. but dont leave things so that many with ME are then left in a "big black hole" as ones with extensive ME issues are being left out with people saying .the CFSAC primer as only supposed to be a guide for GPs.. and the ME/CFS orgs saying.. this illness is suitable for GPs to be treating.. when many of us are finding it just isnt and that GPs are unable to deal with us.
Its a nightmare for various specialists who have no training in ME to be dealing with us too... many of the normal treatments they use cant be used on us due to coexisting ME stuff and the complications that causes.
Either guides on how to treat ME patients need to be written so that our specicalists (BOTH non ME ones or ordinary doctors) have something to follow or specialists NEED to be being trained in ME.
I see things getting better and better for the less severe patient group while the severe extensively affected patient group is still being ignored. I can only hope that the International ME consensus stuff will address things so all the range of illness is being focused on. Hence will be upset if this other primer makes it so the other gets less coverage. (its almost like its been put out at a time to compete against the other... conspiratory???)
Perhaps I should rephrase my question
Cort: Are you aware if the above Primer took the published ICCME into account? And, (although we are still waiting) would you hope (as I do) that when the authors of the ICCME do publish their 'Primer' for physicians, it takes the above into account?
btw Tania - I think as others probably realise by now I am still in (at least) 'two-minds' about whether or not we have been able to prove (let alone by criteria in the absence of objective tests) that we are dealing with 'two' distinct conditions or that what we do have in terms of criteria justify removing the arbitrary 4-6 month 'waiting period'. But I do try and follow all the latest arguments and research.
Good question...I imagine many of the recommendations will be similar - which will provide more of an impetus for the CDC - the only organization with the funds to get its treatment primer out - to change its Toolkit.
You can also try a Google Site Search
Separate names with a comma.