Is it worth explaining the difference between ME and CFS to the public??

[Bob]

Hi Bob


I agree that the WPI research relates to CFS.

That's not exactly what I said. I said it relates to officially diagnosed CFS patients. But in my opinion, it probably relates to historically defined ME patients.

However, personal observations are not reliable as you know. If that were so, science would be a redundant discipline.

The trouble with personally recognising something is - that it is subjective observations not based on science.

ME has been reported to have 64 recognised symptoms that fluctuate in their severity and duration.

Therefore, at any one time an ME patient on personal observation, might resemble having MS, AIDS, and or any other number of illnesses, yet they do not. Likewise, those you observe - might appear to you -at any point in time -to have ME, when they may have PVFS with CNS dysfunction or a number of other illnesses that resemble ME.

I am of the opinion that most CFS patients with immunological symptoms are ME patients, based on the historical definitions of ME.

I think that even Byron Hyde only initially looks for basic things in his patients, such as type of onset, patient-reported symptoms, immunological issues.

But I agree that unless someone does some high quality research in this area, then we won't know if this is so.

The problem is, what diagnostic criteria would we use to find out?

The Nightingale definition has not been peer reviewed.

But I would be interested for Byron Hyde to diagnose the WPI cohort using his definition, to see how many of the patients he considers have ME.

The major problem is the politics, and the fact that we just don't have an official diagnostic criteria for ME. (At least there's not one in the UK - Do any other countries have an official ME diagnostic criteria?)

Well Bob, if that is so - I guess we don't have official diagnostic criteria for any other illness either.

I'm not sure what you mean...

In the UK we have an official condition called CFS/ME, but we do not have any official diagnostic criteria for ME, as far as I am aware.

What are the official diagnostic criteria for ME? Is there an international set of diagnostic criteria? Do any countries diagnose ME officially?

 

[Tulip]

There was a mention of some ME patients being admitted to hospital in a coma, in a paper by Ramsay that I read recently.
I think that he suggested that it might be due to low blood sugar levels.
But I've not seen any other mention of patients in comas anywhere yet.

I know people who sometimes pass out, or faint, but that's entirely different to a coma.

Yeah I had read that bit, but it wasn't from the M.E. in my opinion.

But yes, fainting is a very common symptom!.

 

[Nielk]

Some epidemics of M.E. that started in the 1930's were studied in U.K. Dr. Ramsey studied the patients cohorts of these epidemics and named it M.E.
He claimed, based on his findings that there is an incubation period of a few days and then a full blown disease with specific severe characteristics for a diagnosis of M.E.

Years later, in the 1980's epidemics sprang up in the United States and were studied by doctors such as Dr. Peterson and Dr. Bell. They noticed very similar symptoms as the earlier ones in the U.K. with maybe some differences. These patients were very ill and their doctors were working very hard to try to treat them. The CDC came in and gave it the most unfortunate debasing name of Chronic fatigue Syndrome.

I have a few questions for you:


1- Do you think that the CCC definition of CFS has a resemblance to historical ME?

2-Do you have to be part of an outbreak to receive the diagnosis of historical ME?

3-Do you believe that the seriously ill patients here in the US who got a diagnosis from recognized experts in the field of CFS, have a real illness?

 

[Boule de feu]

Nielk -

If it turns out that ME is a different disease than ME/CFS, I think it would be important for them to find out (the U.K. crowd) since the treatment and research might not be the same.

Would we want doctors to tell us how to treat this disease if what the scientific researchers have come up with are false conclusions about what we have? So a bad association (ME + CFS) would be disastrous for many of them (and probably many of us who do have ME).

I think we are all in the same boat. We are stuck with a complicated and very debilitating disease and we are trying to make sense of what we have. The ME patients are not different from us. They want to figure out what is wrong with them and make sure they are treated specifically for what they have.

 

[Bob]

Hi Nielk,

There has been a lot of discussion on this thread about the historical differences between 'CFS' and 'ME'.
In my opinion, a lot of insensitive wording has been used in this thread, and so I understand where your questions are coming from.

But there has also been a lot of people with different opinions coming together on this thread to understand the differences, and to try to get a fuller picture of the history.

I think I can attempt to summarise the consensus opinion on this thread so far, but I'm sure people will correct me if they don't agree with me...

There are historical definitions of 'ME' which existed before the term 'CFS' had been invented.

The CDC invented the term 'CFS' which many people consider did not adequately take into account the historical research into 'ME'.

The CDC 'CFS' criteria is not very specific, as it allows many fatigue states to be included other than the historical disease 'ME'.
This means that a 'CFS' diagnosis does not accurately diagnose the historical disease known as 'ME'.

Most patients in the USA get an official diagnosis of 'CFS' and in the UK we can only get a 'CFS/ME' diagnosis on the NHS. (I don't know what the case is for other countries.)

Very few people get diagnosed with historical definitions of 'ME' (or get an 'ME' diagnosis from Bryon Hyde, who uses his own definition of 'ME') and to do so we would have to visit an expensive specialist. (Byron Hyde has continued to use the historical definitions of 'ME', and has built upon them in his own research. He has created his own 'Nightingale definition of ME', which has not been peer reviewed.)

Patients with a 'CFS' diagnosis may have the historic disease, known as 'ME', but we can't be sure how many.

If a patient has an official diagnosis of 'CFS', but they don't have the historically recognised disease called 'ME', then what do they have? Many people have expressed the view that these patients have some other real disease that has not been properly diagnosed by their (incompetent) doctors. Byron Hyde says, for example that 40% of the patients who he sees end up having some other diagnosable disease, other than CFS.

We don't know what proportion of the 'CFS' or 'CFS/ME' patient population would fit the criteria for the historic disease known as 'ME'.​

So I think that the proponents of 'ME' on this thread are not of the opinion that people with an official diagnosis of 'CFS' do not have 'ME'.
Instead, they are trying to say that some people with a 'CFS' diagnosis might not have the historical disease known as 'ME' because the CDC criteria is not specific enough to diagnose the historical disease known as 'ME'.
So they are saying that, if people with a 'CFS' diagnosis don't fit a historical definition of 'ME', then their actual disease needs to be properly diagnosed, so they can be treated properly. There are all sorts of serious physical diseases which have 'fatigue' as a predominant symptom, and doctors need to be very careful about diagnosing the exact cause of the fatigue.

I'm sure that people will correct me if I have misrepresented them here.


There's also lots of other areas of the discussion that we haven't reached a consensus on, and we haven't really gone into depth about similar illnesses to ME/CFS such as Post Viral Fatigue Syndrome.

There are still many questions to be answered in relation to the historical disease called 'ME', because there has been very little research carried out of the past couple of decades.


Nielk, I hope that helps explain some of the discussion we've been having?
If not, then please feel free to ask any questions.

It is not intended to be a discussion that divides CFS patients from ME patients (although I agree that some posts may have appeared to be doing that in places, purely due to insensitive and uncareful wording), but it is an exploration of the historical differences between the definitions of 'CFS' and 'ME'.

Bob

 

[Nielk]

Hi Nielk,

There has been a lot of discussion on this thread about the historical differences between 'CFS' and 'ME'.
In my opinion, a lot of insensitive wording has been used in this thread, and so I understand where your questions are coming from.

But there has also been a lot of people with different opinions coming together on this thread to understand the differences, and to try to get a fuller picture of the history.

I think I can attempt to summarise the consensus opinion on this thread so far, but I'm sure people will correct me if they don't agree with me...

There are historical definitions of 'ME' which existed before the term 'CFS' had been invented.

The CDC invented the term 'CFS' which many people consider did not adequately take into account the historical research into 'ME'.

The CDC 'CFS' criteria is not very specific, as it allows many fatigue states to be included other than the historical disease 'ME'.
This means that a 'CFS' diagnosis does not accurately diagnose the historical disease known as 'ME'.

Most patients in the USA get an official diagnosis of 'CFS' and in the UK we can only get a 'CFS/ME' diagnosis on the NHS. (I don't know what the case is for other countries.)

Very few people get diagnosed with historical definitions of 'ME' (or get an 'ME' diagnosis from Bryon Hyde, who uses his own definition of 'ME') and to do so we would have to visit an expensive specialist. (Byron Hyde has continued to use the historical definitions of 'ME', and has built upon them in his own research. He has created his own 'Nightingale definition of ME', which has not been peer reviewed.)

Patients with a 'CFS' diagnosis may have the historic disease, known as 'ME', but we can't be sure how many.

If a patient has an official diagnosis of 'CFS', but they don't have the historically recognised disease called 'ME', then what do they have? Many people have expressed the view that these patients have some other real disease that has not been properly diagnosed by their (incompetent) doctors. Byron Hyde says, for example that 40% of the patients who he sees end up having some other diagnosable disease, other than CFS.

We don't know what proportion of the 'CFS' or 'CFS/ME' patient population would fit the criteria for the historic disease known as 'ME'.​

So I think that the proponents of 'ME' on this thread are not of the opinion that people with a diagnosis of 'CFS' do not have 'ME'.
Instead, they are trying to say that some people with a 'CFS' diagnoses might not have the historical disease known as 'ME' because the CDC criteria is not specific enough to diagnose it.
So they are saying that, if people with a 'CFS' diagnosis don't fit a historical definition of 'ME', then their actual disease needs to be properly diagnosed, so they can be treated properly.

I'm sure that they will correct me if I have misrepresented them here.


There's also lots of other areas of the discussion that we haven't reached a consensus on, and we haven't really gone into depth about similar illnesses to ME/CFS such as Post Viral Fatigue Syndrome.

There are still many questions to be answered in relation to the historical disease called 'ME', because there has been very little research carried out of the past couple of decades.


Nielk, I hope that helps explain the discussion we've been having?
If not, then please feel free to ask any questions.

It is not intended to be a discussion that divides CFS patients from ME patients, although it may have appeared like that in places, but it is an exploration of the historical differences between the definitions of 'CFS' and 'ME'.

Bob

Hi Bob,

Thank you for you very clear explanation.
What I get from your answer is that there is a tremendous frustration in the U.K. for patients there have a very hard time getting a diagnosis of historical M.E. as opposed to the term cfs/me which doesn't mean anything in the U.K. and therefore you don't get recognized as a real disease and can't get treatment. I feel very bad for the position that you are in. It's very frustrating and I wish it wasn't so.
Us here in the U.S. are also frustrated with the CDC criteria. I'm sure if you've been on the forum, you would have seen a lot of references to it. Most of us here much prefer the CCC - Canadian criteria. It's also a big struggle for us here.

I just don't think that putting one group down is constructive. Although I don't believe I have seen any of that by you Bob.

 

[Bob]

Hi Bob,

Thank you for you very clear explanation.
What I get from your answer is that there is a tremendous frustration in the U.K. for patients there have a very hard time getting a diagnosis of historical M.E. as opposed to the term cfs/me which doesn't mean anything in the U.K. and therefore you don't get recognized as a real disease and can't get treatment. I feel very bad for the position that you are in. It's very frustrating and I wish it wasn't so.
Us here in the U.S. are also frustrated with the CDC criteria. I'm sure if you've been on the forum, you would have seen a lot of references to it. Most of us here much prefer the CCC - Canadian criteria. It's also a big struggle for us here.

Thanks Neilk, yes, I believe that 'tremendous frustration' is exactly the situation for most of us, isn't it!
Yes, the situation in the UK is dire, but I don't think it's probably much better for you in the USA.

I just don't think that putting one group down is constructive.

I don't think that anyone has done this on purpose... It's just that many people feel very passionately that the science should be followed, and tremendously frustrated that the establishment scientists aren't even looking at the science...

And so I think that some of our posts have been coloured by the frustration and passion about the subject, and not always expressed perfectly.

 

[Boule de feu]

Although I don't believe I have seen any of that by you Bob.

I agree with you, Nielk.
I would like to commend Bob for his great research work. He is trying to find the facts as they are.
This is a great thread and full of infos. Thank you, Bob.

 

[insearchof]

Neilk

Please read the forum rules.

 

[insearchof]

I agree with you, Nielk.
I would like to commend Bob for his great research work. He is trying to find the facts as they are.
This is a great thread and full of infos. Thank you, Bob.

Finding the facts as they are, and promoting them....was one of the reasons this thread was commenced and although Bob has made some great contributions.......the thread was not started by him.

In other words, there are others on this thread who are and have been doing just that......finding the facts as they are ....long before Bob joined the conversation.

 

[insearchof]

Hi Bob

I am of the opinion that most CFS patients with immunological symptoms are ME patients, based on the historical definitions of ME.

I do not disagree that some of these patient do appear to fit the diagnostic profile for ME, but without specifically screening for ME, we don't really know if they are in there.

I think that even Byron Hyde only initially looks for basic things in his patients, such as type of onset, patient-reported symptoms, immunological issues.

I can tell you, that Hyde gets his patients to give a complete medical history from birth, as well as getting his patients to provide a family medical history from as many relatives as possible. He then goes through an eight page double sided medical list of items/questions, which guides him in his patient assessment. He is a medical detective. I would suggest, that he does not just start looking for basics at the outset. He does not sit with a patient and simply look for or whether they have ME. His starting position is: what illness does the person before me have?

The problem is, what diagnostic criteria would we use to find out?

The Nightingale definition has not been peer reviewed.

The alternative is to use the general body of literature.

But I would be interested for Byron Hyde to diagnose the WPI cohort using his definition, to see how many of the patients he considers have ME.

I think it's the best we have as an alternative to the general body of literary material.

I'm not sure what you mean...

In the UK we have an official condition called CFS/ME, but we do not have any official diagnostic criteria for ME, as far as I am aware.

What are the official diagnostic criteria for ME? Is there an international set of diagnostic criteria? Do any countries diagnose ME officially?

What I meant was, that I do not believe that all areas of medical research have research definitions like we see in CFS and in such instances I believe they would refer to the general body of medical literature.


The diagnostic criteria used is ....the existing medical literature. This is what Ramsay, Richardson, Parish, Shelekov, Hyde and other doctors use and have been using for over 50 years now. That is not only the official diagnostic criteria and approach used to diagnose ME, but that is the general approach used to diagnose most illnesses in medicine: reference to the literature.

 

[Nielk]

insearchof:

The thread was not started by you either

 

[insearchof]

insearchof:

The thread was not started by you either

Correct. I think I made that pretty clear Neilk, when I stated it was started by others.

 

[Bob]

I think this thread has been an extremely productive and interesting discussion.
I wouldn't even have posted here, if others hadn't started the thread and stimulated me into reading up about the research.
And if insearchof hadn't been such an enthusiastic and helpful discussion partner, then I wouldn't have been motivated to post any info on here.
So, basically, this has thread has been a community project, which we've all been learning from, and I'm really grateful for everyone's contributions, which I've gained loads of very useful knowledge from.

 

[Bob]

Could anyone tell me which researchers continued investigating ME after Ramay's death in 1990, apart from Dowsett and Hyde?

And if you could also point me towards any of those researchers' scientific and medical literature published since 1990, that would be really helpful as well.

Thank you.

 

[Bob]

May I ask, were there people with "Historical ME" that suffered from severe sleep dysfunction and Insomnia? (not just initially, but on going?)

I feel that a viral assault on my CNS has altered my ability regulate sleep totally. It is very distressing. At my very worst I am still unable usually to fall asleep naturally. I can be in a state that lies between awake-asleep, my eyes close, just stay like that for hours. Sometimes I will feel myself drifting off only to be jolted awake.

I have had a sleep study, no apnea or RLS, would like to have another some day.

Hi TheMoonIsBlue,

That sounds really horrible for you. I get disturbed sleep patterns as well, but not half as bad as yours sound.

There is some mention of sleep disturbance...

THE EPIDEMIOLOGY OF MYALGIC ENCEPHALOMYELITIS (ME) IN THE UK 1919-1999 (DOWSETT EG, RICHARDSON J. 1999)

http://www.25megroup.org/infomedical_dow_the_epidemiology_of_me.html

CHARACTERISTIC SYMPTOMS INCLUDE;2,3,14

a). An episodic and unpredictable state of central nervous system exhaustion, triggered by mental or physical over exertion often with delayed onset and prolonged recovery

b). A profound neuroendocrine disturbance affecting the hypothalamic/pituitary/adrenal response to stress as well as the normal homoeostatic control of sleep and temperature rhythms, of fluid balance, and of growth and reproductive hormones.

...

See the full list of symptoms, from this paper, by going to the above link, or in my earlier post, here:
http://phoenixrising.me/forums/show...-to-the-public&p=177735&viewfull=1#post177735

If I see anything else, I'll post it for you.

 

[rlc]

Hi Bob, regards setting up a wiki page for a library of historical ME literature if youre interested in organizing the wiki side of it, then Im more than happy to provide all the links to information I have and trying to track down some more of the research.

Another of the important doctors who continued working on until his death in 2002 is Dr john Richardson, he did extensive research into the role of Enteroviruses in ME, He discovered things like, that the Enterovirus infection in ME patients could cause birth defects in the babies from mothers with ME and that if the pregnant Women were given IgG infusions then the babies would be born unharmed.

This Guideline for Doctors that he wrote is an essential read for anyone trying to understand ME http://www.name-us.org/DefintionsPages/DefinitionsArticles/Richardson2002Guidelines.pdf

Theres an entire book on the subject of Enteroviruses and ME written by him that can be obtained here http://www.amazon.com/Enteroviral-M...1_fkmr0_1?ie=UTF8&qid=1304506375&sr=8-1-fkmr0

There an obituary about him here
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1124231/

All the best

 

[Bob]

Hi Bob, regards setting up a wiki page for a library of historical ME literature if youre interested in organizing the wiki side of it, then Im more than happy to provide all the links to information I have and trying to track down some more of the research.

OK, that's great!

I've set up a wiki page here:
http://forums.phoenixrising.me/show...+ME+Research+Literature+and+other+information

I'm new to using a wiki so it might take me a while to get the hang of it.

Also, I can only do this project very slowly, little by little, so it might take some time to take shape.

If anyone wants to contribute to it, or discuss any of it, or get involved in any way, or make suggestions etc, then please use the 'discussion' section attached to the wiki. (If it works!)

I've set it up so that only I can edit the actual wiki, so that I will just add any contributions from the discussion section. I can change this if other people want to get involved.

The idea is to only provide a title, author, and a link to each piece of literature.

If it becomes necessary or preferable to add an introductory note to any of the links, then I might do that as well.

If anyone wants to discuss the wiki, can we do it in the wiki 'discussion' section please.

 

[TheMoonIsBlue]

Thanks, Bob. It is horrible! I think I remember reading about Polio....about how some people were practially asleep all the time and others could barely sleep at all. Maybe this was during the acute illness. I would be interested to know how historical ME patients sleep was distrubed, if applicable. It is insane how dreadfully sleepy I am sometimes only to be in half wake/sleep state.

 

[Bob]

hi insearchof, did you know that the WHO define ME and Post Viral Fatigue Syndrome as exactly the same diseases?

G93.3 Postviral fatigue syndrome
Benign myalgic encephalomyelitis
http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933


Also, the only mention of 'CFS' in ICD-10 is in an index that directs to: G93.3 Postviral fatigue syndrome/Benign myalgic encephalomyelitis.
CFS does not have its own entry in ICD-10, but it is just an index entry that only directs to ME.
This suggests that CFS is just another name for ME, in the opinion of the WHO.


Interestingly, 'Fatigue Syndrome' (not 'CFS') is listed under: F48.0 'Neurasthenia', which is categorised under 'Other Neurotic Disorders', but Neurasthenia is described in some detail, and it sounds very much like ME to me. Anyway, this point isn't relevant to the discussion, I just thought it was interesting.
http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933


It all seems a bit confused to me.

(I may have made mistakes here, but this is my understanding of the ICD-10.)