ME/CFS - Controversy, progress, awareness etc..

condra

Hello everyone,

It has come to my attention that numerous threads have ended up going off topic as people grapple with the controversial nature of CFS/ME etc.

I'd like to invite people to politely discuss CHRONIC FATIGUE and related conditions here.
I'm very interested to hear peoples opinions and experiences.

What is your understanding of the difference between ME and CFS?

How do ME/CFS/Fibro etc relate (if at all) to diseases such as MS, HIV, XMRV, Auto-Immune conditions, Depression/Anxiety, Lupus, EBV, Lyme etc..

How many diagnosed cases of ME are genuine?
Do you believe CBT can have a positive impact on patients lives?
_____

I would also love to hear from anyone who is "in the know" with recent developments in terms of studies/papers/treatments etc.

As this is an emotive issue for many people (including myself), please everyone try to be objective and respectful. Thanks.

kangaroo

Some people might be interested in the following:

Source: US Federal Register
Volume 76, Number 53, Page 14979-14980
Date: March 18, 2011
URL:
http://frwebgate1.access.gpo.gov/cgi-bin/TEXTgate.cgi?WAISdocID=c8qY0P/3/1/0


DEPARTMENT OF HEALTH AND HUMAN SERVICES

---

National Institutes of Health


Open Meeting Notice

Notice is hereby given that the National Institutes of Health (NIH), Department of Health and Human Services, will hold a scientific workshop.

Title: 'State of the Knowledge Workshop on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) Research'.

Dates: April 7-8, 2011.
Time: 8 a.m. to 5 p.m.

Place: Building 31, Conference Rooms 6C8/9/10, NIH campus, Bethesda, Maryland.

Purpose of the Meeting: This workshop will bring together subject matter experts who will discuss multiple aspects of ME/CFS, including epidemiology, etiology, pathophysiology, diagnosis, and treatment. The workshop panelists will identify gaps in knowledge and opportunities for advancing biomedical research.

This workshop is open to the public. Please note that attendance is limited. We encourage registration for those attending in person (see Web address below). For those unable to attend, the workshop will be available via NIH VideoCasting
http://videocast.nih.gov
both during and after the event.

Individuals with disabilities who need reasonable accommodation should indicate their needs on registration or contact Infinity Conference Group by telephone at 703-925-9455, ext. 0, or e-mail at icg@infinityconferences.com.

For more information including an agenda, registration, and visitor information, please visit the workshop Web site:
https://www.infinityconferences.com/InfiniBase/Templates/157557/Index.htm.

Contact Person: Dennis Mangan, PhD; Chair, Trans-NIH ME/CFS Research Working Group, Office of Research on Women's Health, Division of Program Coordination, Planning, and Strategic Initiatives, Office of the Director, NIH; 301-496-9006; Dennis.Mangan@nih.gov.

Dated: March 14, 2011.
Francis S. Collins,
Director, National Institutes of Health.
[FR Doc. 2011-6458 Filed 3-17-11; 8:45 am] BILLING CODE 4140-01-P

kangaroo

I talked about my experiences on another thread. Anyway, it doesn't have ME or CFS in the title so I thought I might be better posting here.

I used to feel refreshed after I sent swimming between the swimming and the shower although I tended to take a bit of time to get dressed, etc.

I have found it much easier to connect the after effects of exertion with the illness after I got the diagnosis. A lot of people use a diary to spot the patterns. As I mentioned, the unusual thing about ME/CFS is the delayed recovery from exertion. Here's a study on that:

(I've made each sentence a paragraph)

Demonstration of delayed recovery from fatiguing exercise in chronic fatigue syndrome.

Eur J Neurol. 1999 Jan;6(1):63-9.

Paul L, Wood L, Behan WM, Maclaren WM.

Department of Physiotherapy, Glasgow Caledonian University, Glasgow, Scotland.

Abstract

Patients with the chronic fatigue syndrome (CFS) complain consistently of delay in recovery of peripheral muscle function after exercise.

The purpose of this study was to try to confirm this observation.

A fatiguing exercise test was carried out on the quadriceps muscle group of ten patients and ten control subjects.

The test consisted of 18 maximum voluntary contractions (MVCs) with a 50% duty cycle (10 s contraction, 10 s rest), and the force generated by each contraction was recorded using a KinCom dynamometer.

This was followed by a recovery phase lasting 200 min in which quadriceps strength was evaluated at increasing intervals, and a follow-up session at 24 h post-exercise involving three 10 s MVCs.

Throughout the exercise period, the MVCs obtained from the control group were significantly higher than those of the patient group (P = 0.006), but both groups showed a parallel decline in force over the 18 contractions, in keeping with a similar endurance capacity.

Recovery was prolonged in the patient group, however, with a significant difference compared to initial MVCs being evident during the recovery phase after exercise (P = 0.001) and also at 24 h (P < 0.001). (this means they were actually weaker in the recovery phase)

In contrast, the control group achieved MVCs which were not significantly different from initial values during the recovery phase, and maintained these at 24 h.

These findings support the clinical complaint of delayed recovery after exercise in patients with CFS.

cltt97

The Lancet : Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial

LegacyUser

http://www.imet.ie/

irish ME Trust is probably the best source of info on ME in Ireland. Outside of ireland the hummingbirds site http://www.hfme.org/whatisme.htm is very good but maybe you are not going to have links to non irish organisations

LegacyUser

cltt97 wrote: »

The Lancet : Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial

the lancet artice has been criticised alot hasn't it?

cooked

cooked wrote: »

the lancet artice has been criticised alot hasn't it?

I have yet to read that Lancet article, but my first concern would be that it is funded by the Department for Work and Pensions in Scotland i.e. the department who wants to reduce the number of people claiming disability or illness benefit...

cltt97

Oh Dear... I only posted this because I thought it might be useful for people and the Lancet is usually regarded as a very good Journal. So please no shooting the messenger :-)

cltt97

cltt97 wrote: »

Oh Dear... I only posted this because I thought it might be useful for people and the Lancet is usually regarded as a very good Journal. So please no shooting the messenger :-)

Not criticising, just expressing a view. Indeed the Lancet is very highly regarded in the science/research world, but with every article ever written, there will always be someone who wants to debunk it. ME/CFS is a very highly taut and emotive area of research and you will regularly find that any articles/research published in this area will generally attract a certain amount of controversy. The recent publications in the area of CFS and XMRV are a prime example.

Resend

Starla_o0 wrote: »

Not criticising, just expressing a view. Indeed the Lancet is very highly regarded in the science/research world, but with every article ever written, there will always be someone who wants to debunk it. ME/CFS is a very highly taut and emotive area of research and you will regularly find that any articles/research published in this area will generally attract a certain amount of controversy. The recent publications in the area of CFS and XMRV are a prime example.

most doctors tend to go by it and the New England Journal of Medicine. A lot of what is in other journals is rubbish not even peer reviewed. Doctor once told me anyone can produce a journal. Lancet and NEJM are respected

condra

My experience with ME/CFS is that exertion quickly exasperates my symptoms during a "bad patch", and that light exercise helps during periods of remission, but hey, everyone benefits from stretching their legs and getting some fresh air - when they can.

My personal opinion is that ME is the result of systemic viral infection.

I think a significant percentage of people diagnosed as having CFS/ME, probably have other undiagnosed conditions such as Lyme Disease, Lupus, Thyroid problems, Addisons, celiac disease, etc..
(especially in Ireland, where we have a third world health system, run by a shower of drunk, apathetic, cronies)

I don't believe there is a place for CBT in the treatment of ME.
The evidence against CBT is mounting, and anti-viral, and possibly anti-convulsant therapy may lead the way forward, alongside dietary restrictions, and avoiding stress.

There are probably a number of depressed people who claim to have ME. They do untold damage to the credibility ME/CFS. I hope a truly reliable diagnostic blood test eventually becomes available.

Resend

condra wrote: »

My experience with ME/CFS is that exertion quickly exasperates my symptoms during a "bad patch", and that light exercise helps during periods of remission, but hey, everyone benefits from stretching their legs and getting some fresh air - when they can.

My personal opinion is that ME is the result of systemic viral infection.

I think a significant percentage of people diagnosed as having CFS/ME, probably have other undiagnosed conditions such as Lyme Disease, Lupus, Thyroid problems, celiac disease, etc, especially in Ireland, where we have a third world health system, run by a shower of drunk, apathetic, cronies.

I don't believe there is a place for CBT in the treatment of ME.

There are probably a number of depressed people who claim to have ME, but that is a separate issue altogether.

probably also some who have Lyme Disease, Lupus, Thyroid problems, celiac disease, etc, and claim to have ME

condra

Resend wrote: »

probably also some who have Lyme Disease, Lupus, Thyroid problems, celiac disease, etc, and claim to have ME

Absolutely. - though depending on whether or not they have been properly diagnosed, they might say they have "chronic fatigue".

Speaking from my own personal experience, I tend to describe my condition as simply "Chronic Fatigue", which I believe loosely describes my (10 year) condition, without attributing it to any specific disease.

The reason for this is because, while I do strongly believe in M.E., I am skeptical of my own diagnosis (or lack there of) -- I still think I might at some point be diagnosed with something else. Wishful thinking perhaps.

What I do know for certain, is that my own health problems share most of the criteria for CFS/ME. My symptoms are very real, very physical, and can be quite scary at times.

cltt97

Condra have you ever come across this research by Dr Lowe who believes that Fibromyalgia, CFS and all those conditions might be caused by peripheral resistance of cells to thyroid hormone. So despite the thyroid blood tests coming back normal, the cells are actually starved of it and hence lack of energy.

condra

I haven't heard about that, though I don't keep up to speed as much these days. There is just so much to read out there between medical trials, different hypothesis etc.

I'm sure everyone knows by now, "chronic fatigue" very loosely sums up the plethora of symptoms reported by people with CFS/ME. I'm not a medical person, but I can't imagine thyroid malfunction being responsible for them all. I imagine a significant proportion of "the walking dead" do have thyroid problems though.

Persistent infection seems more likely (perhaps with some autoimmune trickery thrown in for good measure)
As far as I know, chronic, persistent viral infection is the most common hypothesis these days.

From what I've read, anti viral treatment has been the most successful, followed by anticonvulsants, and steroids.

cltt97

Apologies for my ignorance, but just wondering, are ME, CFS and Fibromyalgia the same? I haven't quite worked that out yet, seems like all of these and hypothyroidism have all very similar symptoms and there appears to be a lot of similarities. This Dr Lowe describes some of it here. Well, one thing we all definitely have in common is that we're feeling crap and having a hard time figuring out how not to!

condra

cltt97 wrote: »

Apologies for my ignorance, but just wondering, are ME, CFS and Fibromyalgia the same?

As far as I know, many people with ME will also get the muscle and joint pain associated with Fibromyalgia Syndrome ("FMS"), though possibly not as bad. Likewise, a lot of people with FMS have ME symptoms. They both come under the "chronic fatigue umbrella" and are assumed to be linked.

I suffer from muscle and joint pain during bad patches.

DR LOWE wrote:

The reported incidence of primary hypothyroidism in the general non-elderly USA population varies between 1% and 5%. Laboratory thyroid function testing suggests that the incidence of primary hypothyroidism in FMS is 10% to 13%.

In other words, a number of people who have hypothyroidism, have been wrongly told they have, or wrongly claim to have FMS. (there is no diagnostic test for Fibromyalgia)

I'm sorry to disagree with your thyroid idea, but I'm utterly convinced ME is a result of persistent infection.

cltt97

condra wrote: »

I'm sorry to disagree with your thyroid idea, but I'm utterly convinced ME is a result of persistent infection.

I am not disputing this, I just found that hypothyroidism is often not diagnosed, or antibody tests are not performed and although some people are clinically euthyroid, they do have the condition and then get mis-diagnosed as having someting else, and only years down the road when the thyroid gland is already half dead will the biochemistry show up and they could have avoided a lot of misery had they been properly diagnosed and treated in the beginning. That's why I thought if someone was diagnosed with any of the "chronic fatigue" conditions, I would urge them to go and get thyroid function tested and insist on inclusion of antibody tests, if nothing else, at least it can be crossed of the list of potential causes.

I myself get plenty of joint pain on and off, but nothing like it is described in FM, and I doubt I have anything other than a totally shot thyroid gland (and slightly fatigued adrenals), but as I'm slowly managing to get all the madness under control, all the symptoms slowly start improving. But I've been at it for 1.5 years now, so any sharing of ideas and thoughts might help other people, so nothing better than a healthy sharing of ideas

condra

Sorry, I see what you were getting at.

Thyroid problems do seem to mimic other conditions. It's sad that so many conditions do go undiagnosed.

People seem to think that 3 viles of blood is enough to test for everything 100% accurately, but this unfortunately is not the case.

I think patients should be extra vigilant when they are given any diagnosis based solely on the process of elimination - ME and IBS being prime examples.

Everyone's heard the cliché, "well you don't have bowel cancer, crohn's or colitis, lets just call it IBS, now get out".

heleneindub

For my part now it is too late for getting my money for the delivery, I have called paypal and I had only 45 days to be able to claim the refund because of their sluggishness I was well over the limit grrrrrrrr:(, I have been told to call my bank but even my bank can do nothing for me ...
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heleneindub

For my part now it is too late for getting my money for the delivery, I have called paypal and I had only 45 days to be able to claim the refund because of their sluggishness I was well over the limit grrrrrrrr[IMG]file:///C:/Users/IBM_AD%7E1/AppData/Local/Temp/msohtml1/07/clip_image001.gif[/IMG], I have been told to call my bank but even my bank can do nothing for me ...
I have to go to lodge a complaint with the garda what do you think??

kangaroo

@heleneindub I see from this thread: http://www.boards.ie/vbulletin/showthread.php?t=2056478230&page=4 you are talking about CFS furniture. However, this thread is about the medical condition, Chronic Fatigue Syndrome.

heleneindub

Sorry about that