Cure Together's Most Effective Treatments for CFS

[Cort]

Based on the CureTogether website

http://curetogether.com/chronic-fatigue-syndrome/symptoms/

The most effective treatments for CFS?

Pacing, meditation, gluten free diets, avoiding bad foods, relaxation exercises, low dose naltrexone, EFT and Sauna

Most Effective but Underutilized Treatments : LDN, EFT and Sauna are the most effective treatments that are underutilized..It doesn't show it but methylation is one of the more effective but underutilized treatments as well - go to the link below and hover over the dots to see what they all refer to.

http://curetogether.com/chronic-fatigue-syndrome/ig/treatment-effectiveness-vs-popularity

There's alot that's not in here obviously

 

[richvank]

Hi, Cort.

Methylation treatments are currently ranking 19th in average effectiveness at CureTogether.com and this is actually shown on the current Infographic:

http://www.curetogether.com/chronic-fatigue-syndrome/ig/treatment-effectiveness-vs-popularity

Most of those above it are lifestyle changes, which are helpful, but do not address the root issues in the biochemistry of ME/CFS, in my opinion. I suspect that one of the reasons for the responses that showed worsening on the methylation treatments is the detox symptoms that arise with this type of treatment. Unfortunately, it seems that these symptoms are inevitable in order to clear out the toxins that have accumulated during the illness.

I encourage people to post their experiences with the various treatments. It is necessary to sign in to the site to contribute, and once this is done, a person can add other treatments that aren't currently listed.

Best regards,

Rich

 

[garcia]

Most of those above it are lifestyle changes, which are helpful, but do not address the root issues in the biochemistry of ME/CFS, in my opinion. I suspect that one of the reasons for the responses that showed worsening on the methylation treatments is the detox symptoms that arise with this type of treatment.

I agree Rich, which is why I warned of the dangers of such a survey. As you say, real medical treatment often makes you feel worse in the short-term (e.g. due to IRIS). I personally know someone who was denied medical treatment in the UK because of a similar survey (conducted by the ME Association). The treatment/drug in question also made some people worse in the short term (i.e. it was working!). On that basis it was not prescribed. It is an absolute travesty.

As they say in computing, Garbage-in, Garbage-out.

The most effective treatments for CFS?

Pacing, meditation, gluten free diets, avoiding bad foods, relaxation exercises, low dose naltrexone, EFT and Sauna

A lay person would look at the above and conclude that "CFS" (whatever that is) is a lifestyle illness, not a severely debilitating neuro-immune disease. I can't speak for others but I do not have a "lifestyle disease". Lifestyle choices do not cure me.

When will people stop treating ME/CFS as a lifestyle disease and stop advocating lifestyle choices as "cures"???

 

[FunkOdyssey]

A lay person would look at the above and conclude that "CFS" (whatever that is) is a lifestyle illness, not a severely debilitating neuro-immune disease. I can't speak for others but I do not have a "lifestyle disease". Lifestyle choices do not cure me.

When will people stop treating ME/CFS as a lifestyle disease and stop advocating lifestyle choices as "cures"???

When better treatments come along? It doesn't surprise me in the least that those simple lifestyle things help more people than most of the pharmacological options. That doesn't mean it's a "lifestyle disease". It means the current pharmacological treatments simply do not work very well for a majority of users. I think that describes the current state of things pretty accurately. It is what it is.

 

[anne_likes_red]

A lay person would look at the above and conclude that "CFS" (whatever that is) is a lifestyle illness, not a severely debilitating neuro-immune disease. I can't speak for others but I do not have a "lifestyle disease". Lifestyle choices do not cure me.

When will people stop treating ME/CFS as a lifestyle disease and stop advocating lifestyle choices as "cures"???

I really hope no one is advocating any of these things as cures. Advocating them as potentially beneficial interventions is fine by me personally - avoiding gluten and all grains is the difference between bedbound and not in my case. But it's far, far from a cure! Although these things may take some of the sting out of the downstream effects of a biological cause, like Rich says they don't actually address the root issues.

In the case of children with Autism dietary modifications are often recommended. For some the improvements from that alone are enough that, though they still need support, children can be integrated into mainstream education and social situations. In the case of a developing child any "load" that can be taken off is crucial. I'm glad to see these potentially beneficial lifestyle modifications promoted....but like you I'd never be happy to see them promoted as a "cure".
Sadly, I think some of the "Curing Autism" books, and advocates do exactly that

 

[anne_likes_red]

When better treatments come along? It doesn't surprise me in the least that those simple lifestyle things help more people than most of the pharmacological options. That doesn't mean it's a "lifestyle disease". It means the current pharmacological treatments simply do not work very well for a majority of users. I think that describes the current state of things pretty accurately. It is what it is.

Agree.
Bring on the better treatments!