Is there any literature to prove the validity of this disease

[Aerose91]

There is http://www.butyoudontlooksick.com/ by Christine who is the one with the "spoon theory".

Damn.

 

[alex3619]

The problem with quoting WHO ICD codes as evidence is that its almost worthless. Its not a scientifically validated position. Its just a bureaucratic code for insurance and data recording purposes. Nearly all doctors know this, so once you quote the ICD codes to them and claim it as evidence you instantly lose credibility. Everything else you say is then suspect.

Similarly its impossible to credibly claim that CFS does not exist, or that ME/CFS does not exist, as clearly it does in the minds of the vast majority who have heard of them.

In logic, what does a "/" mean? It means "or". I think that is a mistake with respect to ME/CFS, but its not one that is easy to explain to most. The choice of ME/CFS was political, not scientific. It has very real and far-reaching political ramifications, with many levels. Until we have a better name, vastly superior diagnostic criteria, or replicated and tested biomarkers, I don't think its going away.

The CCC for example is primarily an ME definition, but they used the term ME/CFS so that they could reach people who were firmly entrenched in the CFS viewpoint. When many of the same authors wrote the ICC they abandoned the CFS part.

I like to talk about ME and CFS, and try to treat them separately, but in some cases, especially referring to past research, its impossible to get away from CFS even when talking about ME. "CFS" and "ME/CFS" are here to stay, but I would like to reach a point where they are mostly just historical curiosities, like neurasthenia.

 

[heapsreal]

I read the other day that mecfs is used so that research in the last 20 to 30 on cfs isnt lost which many may think is irrelevant to ME. It was mentioned that cfs was the term used in the usa and if u had the same disease in Europe then u would get an ME diagnosis. Cfs and me were used interchangeable for so long. If cfs term was dropped then there would be very little research on ME in the last 30 yrs.

Maybe using cfsme for another 10 yrs and then drop the cfs part may help avoid losing cfs research that is relevant to ME??

 

[Snow Leopard]

In my experience people start listening when I tell them that a study of over a million cancer patients found an association of just one cancer with CFS: lymphoma. I then tell them that a double blinded randomised controlled trial found a positive effect for a drug that is used to treat a type of lymphoma and autoimmune disorders. I then tell them that lots of nonspecific immunological abnormalities have been demonstrated in hundreds of papers and therefore CFS is (on the weight of evidence) most likely to be an immunological disorder.

 

[alex3619]

In my experience people start listening when I tell them that a study of over a million cancer patients found an association of just one cancer with CFS: lymphoma. I then tell them that a double blinded randomised controlled trial found a positive effect for a drug that is used to treat a type of lymphoma and autoimmune disorders. I then tell them that lots of nonspecific immunological abnormalities have been demonstrated in hundreds of papers and therefore CFS is (on the weight of evidence) most likely to be an immunological disorder.

The results of the phase 2 Rituximab trial might be out next month. That will give this kind of argument some real weight. For phase 3 results we might have to wait years however. Phase 3 results have much greater weight.

 

[Aerose91]

Raindrop-

That was a great site, thank you I'm going to print that. I also am keeping the Nightingale definition from Dr Hyde as well.

And Silverblade- that's a damn good point, I may just keep that on hand. Such a damn shake it has to get to the point of carrying around a poor girls death certificate just to prove the validity of what we're going through.

 

[SickOfSickness]

I suggest videos as many people are visually oriented and it's harder to ignore.

I have no suggestions on which but there are some short or long which show multiple sufferers.

I like the ones where the sufferer explains their active happy life pre-M.E. and now, and sometimes the long journey where they were disbelieved and went through expensive painful testing and treatment options.

They make me cry, not surprisingly. I like to hope that someone not sympathetic to M.E. could be moved a little by their faces and stories.

 

[peggy-sue]

Alex said;
"It was so strange that the first time they saw it in the test they thought the machine was broken."

Not the first time this has happened in a scientific breakthrough.
I was doing the experiments in which the discovery of first pass metabolism in the liver was made.
Results were calculated, graphs wre drawn, they had a very funny hump in them which should not have been there.

My colleague and I were shouted and screamed at, told to take the GLC (gas-liquid chromatograph) apart and repack all the columns (they were done individually by hand in those days, it took over a week to do), the samples were all re-defrosted, the experiments run again... and again.
More getting shouted and screamed at, until eventually, boss man decided we had not done something stupid, the machine was not broken or leaking and that the results were real and meant something.

Of course, boss-man got all the kudos. He never bothered even to apologise - or explain afterwards to the staff he'd abused that it was ok.

Nobody was looking for anything like first pass liver metabolism. We were simply characterising the absorption, distribution and elimination of a drug after it was administered.

 

[SickOfSickness]

Of course, boss-man got all the kudos. He never bothered even to apologise - or explain afterwards to the staff he'd abused that it was ok.

(That's your ex-boss in the middle.)

Good story.

 

[peggy-sue]

He was a driven A-type personality, super-fit, taking heart protective aspirin in 75mg doses years before anybody else did, didn't smoke, drank in moderation... worked and wormed his way to the top by standing on others and buttering others up...

and dropped dead in his mid 50s, in the middle of a game of squash, from a heart attack.
It's difficult to even find his name, googling nowadays.

Karma?

I apologise for going off-topic!

 

[Lynne B]

Re any convincing paper on our disease, try Cort Johnson's site, http://www.cortjohnson.org/blog/2013/ on the FDA's recent paper http://www.fda.gov/downloads/ForIndustry/UserFees/PrescriptionDrugUserFee/UCM368806.pdf. I'm not sure that last reference will get you to the right FDA site, but you can go through Health Rising (Cort's site), if it doesn't.

cheers, Lynne

 

[Raindrop]

Thanks so much, Ember, for explaining this.
I am new to a lot of this, but NOt being ill. My case goes all the way back to adolescence if not
childhood. All the political stuff I just couldn't keep up with after XMRV.
I was drained and still am to some extent. Like I really haven't followed
the IACFS/ME. Is their position something that most of us wouldn't support (like most of the rest)?
Will no organization support the ME/CFS Primer?

 

[Raindrop]

Thanks so much, Ember, for explaining this.
I am new to a lot of this, but NOt being ill. My case goes all the way back to adolescence if not
childhood. All the political stuff I just couldn't keep up with after XMRV.
I was drained and still am to some extent. Like I really haven't followed
the IACFS/ME. Is their position something that most of us wouldn't support (like most of the rest)?
Will no organization support the ME/CFS Primer?

 

[Raindrop]

I swear one of these days I'm going to write a book titled; "But You Don't Look Sick"

There is another book titled Just Fine; Unmasking concealed Chronic Illness and Pain by Carol Sveilich, MA.
I was a contributor. The book features stories of people with many different invisible illnesses, dealing with the concept of looking "just fine" despite being sick. Would recommend reading.

 

[Ember]

I really haven't followed the IACFS/ME. Is their position something that most of us wouldn't support (like most of the rest)? Will no organization support the ME/CFS Primer?

The IACFS/ME supports its own ME/CFS Primer and the use of the CCC. Although the CCC is a decade old now, it's preferred to the Fukuda definition used by the CDC.

The ME Primer, on the other hand, is part of the newer ICC. Invest in ME has welcomed and fully supports these new criteria, and organizations such as the MEFM Society of BC and the National Alliance for Myalgic Encephalomyelitis support the ME Primer too.

​

 

[Raindrop]

The IACFS/ME supports its own ME/CFS Primer and the use of the CCC. Although the CCC is a decade old now, it's preferred to the Fukuda definition used by the CDC.

The ME Primer, on the other hand, is part of the newer ICC. Invest in ME has welcomed and fully supports these new criteria, and organizations such as the MEFM Society of BC and the National Alliance for Myalgic Encephalomyelitis support the ME Primer too.

​

I am glad to hear that the MEFMSociety of BC and Ntl Alliance for ME support the ME Primer.
I was just so impressed. I went to Invest in ME to see
about how to order a hard copy, but wasn't successful in finding it.
I know I can print it, but would be nice to have the hard copy as
it would look more professional.

 

[Ember]

I went to Invest in ME to see about how to order a hard copy, but wasn't successful in finding it. I know I can print it, but would be nice to have the hard copy as it would look more professional.

New International Consensus Criteria

A new standard for guidelines has been published by a leading group of international researchers. The authors discuss the clinical application of their criteria, as well as paediatric considerations and research applications. The authors conclude that they -

“believe the International Consensus Criteria will help clarify the unique signature of ME” and they state unambiguously that “individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for (Health and) Clinical Excellence (NICE) criteria for chronic fatigue syndrome”.

Invest in ME IiME are the UK distributors for the current Canadian Guidelines and welcome these guidelines. We have for a long time stated that we support an evolutionary development and improvement of the Canadian Guidelines. We believe this is a step in the right direction.

The ICC can be ordered from IiME - please email the charity for this -

In the past we, together with the European ME Alliance, have discussed with our conference presenters regarding updating of the criteria. The International Consensus Criteria are welcomed and we fully support these new criteria. Available to download via this link - click here.

Contact Invest in ME

​

 

[Allyson]

something very wrong - 3 times tried to post and it froze and post totlally disappeared -
even copied ths post 3 times to re- pste f it froze but it would not post after the freeze

getting very fed up with trying to post on this forum now

even losing full and saved posts when I try to edit them

A

 

[Tom Kindlon]

In hard copy, the ME Primer is available only through Invest in ME, as far as I know, although Marj van de Sande can also be contacted regarding reprinting. It's also freely available to download online.

Also, from the Irish ME/CFS Association: http://www.irishmecfs.org/events.html#primer .

We sent a copy out with our summer newsletter (around 340) suggesting people could give it to their doctor. Some members have bought extra copies. New members also get a copy.

 

[Ember]

Also, from the Irish ME/CFS Association: http://www.irishmecfs.org/events.html#primer .

The webpage reads, "For the printed version, the cover is printed in colour, inside is black and white." My printed copy is in colour, as is the online version. Was a colour version not available?