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From Our Readers: Comments and Suggestions – 9/16/15

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The Long Story of Ampligen

Re: Hemispherx Enters Into an Agreement With myTomorrows for an Early Access Program for Rintatolimod in Europe

Quite a history.. How long have we been waiting for this? Ten years or more? It is noteworthy that Netherland has taken the lead. Like Russia first getting FDA approval for Transfer Factor. We seem to be victimizing our severely ill by delaying the most effective treatments.~Posted by: retirednurse, Aug 19, 2015



The Battle Continues

Re: Aug 8th – Honoring the Struggle of the Severely Ill People with ME/CFS

This is a crucial news article. The strong overcome the weak, and CFS/ME are the weak. We will not give up though. There is a God. ~Posted by: retirednurse, Aug 19, 2015



Incredibly important research; great to see 

Re: Polymorphism in COMT is associated with IgG3 subclass level and susceptibility to infection in patients with chronic fatigue syndrome

Years ago when I tested positive for Epstein Barr Virus (EBV) few professionals knew what to conclude other than "Yes, at one point in your life you've had an active infection" and further investigation soon confirmed this is actually a prevalent infection in the US population that most of us are exposed to in infancy or childhood; especially if kissed on the mouth by those who carry it since this is the virus that incites Mononucleosis, aka "the kissing disease."

However, 10 years later, there is now a Chronic Fatigue Profile that Life Extension Foundation (LEF.org) has developed which looks for both EBV antibodies and Cytomegalovirus antibodies as well as other pro-inflammatory markers and/or nutrient deficiencies that are typically found in those who suffer from issues of CFS, Fibromyalgia, MCS, etc.

Although this Profile is not inexpensive, perhaps those with good insurance and/or the ability to pay out of pocket will be interested in such comprehensive investigation; primarily to know years sooner than I ever did about which infections and deficiencies are wreaking such havoc. ~Posted by: SeaVitality, Aug 19, 2015



Dumbfounded

Re: Chronic fatigue syndrome: The male disorder that became a female disorder

Hey Volpone,

I’m really not the type to get into a “comment war,” but you’ve broken my restraint. You win. Lol. I have to reply to this. You’re just too dense on this article. You didn’t just miss the dartboard, like last time. You missed the wall. Ugh. I'd rather be doing something else right now.

Okay, I’m gonna do this do this piecemeal. I’ll paste your comments into brackets (I don’t think the ProHealth.com comments system permits italics), and intersperse your text with my replies. I’ve found this approach suits me for a lot of my correspondence, not just the adversarial kind. Oh, by the way, there were some typos in the posting of my first comment that were not mine (they weren’t in the Microsoft Word file from which I pasted the text), so if you see some really obvious typos in this posting, there’s a good chance they were created on ProHealth’s end.

[I'm afraid it's you who are obtuse and have missed the point. ]

Well, one of us certainly did. I blunder with the best of them. I just don’t think this is one of those times.

[The point of my negative criticism is that regardless of the truth of the author's assertions about the shifting status of ME/CFS as a social phenomenon, all that her trite reiteration of the popular misconceptions about it achieves is to further reinforce these misconceptions in the mind of uninitiated readers, who will always be in the majority.]

That wasn’t what you said the first time around. Not even with an interpretation of your previous comment as favorable to your new claim as possible. But let’s set that aside and just consider what you’re saying now.

While the “popular conception of CFS throughout the ages” topic is certainly not a new one, to call the article “trite” is to overlook its distinctive merit. The author doesn’t just reiterate public perception. She casts the public as a sort of collective human subject of an anthropological case study, with a tone that, while cold, clinical, and detached, is dripping with criticism. It’s one of the most effective examples of this genre of CFS article, at least that I’ve seen. It’s its nuance that gives it its punch.

I keep reading, and re-reading the original article, trying to understand where you're coming from on this. It just doesn’t make any sense. As near as I can figure, the only way for the article to reinforce a psychosomatic view of CFS upon a reader, is for that reader to skim only certain segments of the article out-of-context. In fact, I suspect that that’s what happened here, Volpone. You skimmed the article, thought it was one of those “CFS is all in your head” articles, and then posted a comment accordingly (even though the article was precisely the opposite kind, actually castigating the “CFS is all in your head” camp). Then, when I called you out on it, you dug in and tried to save face. Of course, I can’t know that’s how this played out. It’s only a supposition, but it fits the available facts. If it is true, it would understandable. We’re busy people, and ProHealth is a massive clearinghouse of CFS articles. We have little choice but to skim them. There isn’t time to read them all, and many of them are too repetitive to read cover-to-cover anyway. When I first started reading the article, I thought it was a “CFS is all in your head” article too. I’m sure I’ve had a wrong impression of many an article I’ve skimmed. But then I wouldn’t have posted a comment, much less such critical one, on something I had only skimmed. That would be irresponsible.

I can’t argue that “uninitiated readers” are in the majority, but I doubt that’s true for ProHealth.com (unless you count people would who barely skim an article and then carelessly post comments on something they really hadn’t even read). ProHealth.com is a niche Web site of information on a niche subject, appealing almost exclusively to people with a preexisting vested interested in that subject. It’s not a site that an uninterested person would just stumble upon, like a TV commercial, or a popular magazine article, or a billboard. And I’m going to go out on a limb here and say that the “Information Centre for Gender Research” that put out this article doesn’t have great penetration into pop culture either, not even in its home country of Norway (with a name like “Information Centre for Gender Research,” how could it? Lol.)

[If the author had been saying anything new or revelatory about ME/CFS as a social phenomenon, there would be some value in her article, in spite of the damage it potentially causes, but there is nothing new here. As such it is hardly what could be described as "insightful", unless your acquaintance with the popular misconceptions about ME/CFS is presently quite limited.]

While it’s true that the author didn’t unearth new facts (which would be hard to do on such a well-trod subject), I must restate that it is probably the most effective of its genre I’ve read because of the approach she took, making the criticism self-evident rather than just whining about public stupidity explicitly. The damage I can see it causing is hurting the feelings of someone who skimmed it and mistakenly though the author was “against them” rather than “for them.” But if people want to skim an article and then develop a fully-formed reaction as though they’d actually read the article, well, that can’t be helped. Public idiocy is something CFS patients live with every day, and dialogue about it is very therapeutic. We CFS patients need it. Censoring sober depictions of this public idiocy would hurt us, and our cause. We have to confront bias and how it comes about. I applaud the article author’s contribution on this front, and her unusual approach.

[And by the way, sorry to disappoint you, but I don't have ME/CFS. You'll have to try a different approach at patronising me, which, given the readiness you've shown in doing so already, I expect you will.]

Lol. Well then, that explains it….why you’re so clueless, I mean, and why you sound more offended than concerned. When I suggested CFS as accounting for your misconstruing the article, I wasn’t trying to patronize you. For those of us with CFS, distorted perception, especially in the realm of reading, is just a part of life. I didn’t bring up CFS as a personal knock on you. My goodness, no. We see CFS-induced misunderstandings on this site all the time. Yes, I’ve insulted you….many, many times, usually forthrightly….honestly. Your laziness….your carelessness….your self-indulgence, deserved every barb. So you don’t have CFS, hmm? I suppose your interest is occupational, or maybe there’s a friend or a loved one involved? The last thing I want to do is discourage someone’s participation here. But understand, this is our lives you’ve made a casual hobby of. We want you here. We need all the help we can get. But in our collective struggle, there are too many bad guys and not enough good guys. The article was written by a “good guy,” and CFS patients tend to be very protective of their allies. Please keep visiting, and commenting. But please do it with care. The exchange, between you and me, Volpone, isn’t a tit for tat in the struggle to save face. This is about the struggle for our lives. Every CFS patient knows what it’s like to have a so-called “friend” who’s “concern” is really just a casual self-indulgence. I hope the person on whose behalf you’re here visiting can count on you to be more than that. ~Justin (ManInBoysBody), Age 31, FL



Perhaps we need both carrot & stick? 

Re: Dear Dr. Collins: I’m Disabled. Can the N.I.H. Spare a Few Dimes?

Thinking conventionally, there's not an awful lot most of us suffering this illness & similar can do to motivate anyone at the NIH. I could have spent weeks & not come close to Brian's letter. 

But we can make it personal… I can't think that there's too many people in the world that wouldn't be bothered if 10s of thousands of people wished them ill. Such a campaign doesn't have to be truly nasty, being no more, no less than examples in TV ads, from politicians to political activists to the ASPCA. 

This is our life — This is the man responsible — Call, write, e-mail, fax you Congressional Reps Now. Or perhaps a Twitter campaign along the lines of "Ask Dr. Collins Why?". 

Dr. Collins, why can't I get out of bed today? Dr. Collins, why must I suffer unbearable pain? Did you sleep well Dr. Collins, because I couldn't sleep at all thinking of you. ~Posted by: mikiem, Jul 22, 2015



Sleep medications 

Re: Top Doctors on Sleep: What the Experts Recommend for CFS & FM Patients

I'm a psychotherapist and even I must admit that CBT often has only modest benefit for people suffering from insomnia and/or chronic pain. I agree benzodiazepines probably should not be used as a first line treatment for insomnia, they should not be ruled out for people who have not found relief with other medications. ~Posted by: hbg007, Aug 31, 2015



query 

Re: Multidisciplinary rehabilitation treatment versus cognitive behavioural therapy for patients with chronic fatigue syndrome: a randomized controlled trial

Has anyone read the full paper? I do not have access. I would like to know what their version of MRT is.

usually MRT is either coordinated interdisciplinary teams where mutual goals are set and the individuals from each profession attempt to work on these goals in their individual sessions; or integrated interdisciplinary teams mutual goals are worked on in joint treatment sessions with members of different professions (specialist physician in rehabilitation medicine with a paramedical team) participating in the sessions. The paramedical team usually consists of physiotherapist, occupational/rehabilitative therapist, psychologist or psychiatrist.

The latter is the most common in UK and Netherlands, also in Australia, Canada and New Zealand.

They say QOL improved for both groups but that fatigue was reduced more in MRT group over CBT group which is what you would expect because of the involvement of physiotherapy. I doubt that the QOL was a significant improvement though. ~Posted by: IanH, Sep 5, 2015


Not so fast! 

Re: Ask the Doctor: Is CFS an onset to fibromyalgia? What is the difference?

In complex illnesses like ME/CFS the number of genes involved seems to be correlated to the type and extent of the symptoms. This can be the case within a family.

 
There are now many known instances of the following "syndromes" existing within three generations in the same family:
 
ME/CFS, FM, MCS, MFPS.
 
This is similar to these syndromes, where the number of genes involved are correlated to the type and extent of the symptoms:
 
Schizophrenia, autism
 
So when we label a syndrome we tend to bias the view of the syndrome and it becomes an error of logic to assume that a similar symptom set is one illness.
 
We say things like "ME/CFS has many different triggers" "ME/CFS affects people differently". These are assumptions are based on the previous errors of logic.
 
On the other hand it is handy to have a label, a word that is shorthand for what is wrong.
 
This problem causes confusion in both clinical diagnosis and research diagnosis as we can see when we look at the various diagnostic definitions/criteria. What happens here is that the criteria for the label become restricted to certain mix/degree of the symptoms eg.
PEM, Memory and cognitive deficits (brain fog), Non-restorative sleep.
 
In the Canadian criteria, The clinical definition makes it clear that in order to meet the diagnostic criteria, the patient must become symptomatically ill after exercise, and must also have neurological, cognitive, endocrine, dysautonomic (for example, orthostatic intolerance), and immune manifestations.
 
Now what if you have all of them except PEM? There are quite a few people with all the others but imperceptible PEM. Do they not have ME/CFS? 
 
If they have myalgia they will definitely be labelled FM. (and these people are told "exercise is what you need").
 
If they have extensive chemical/toxin susceptibility they will be labelled MCS. These people may or may not have PEM. This problem in cases of MCS who's parent meets ME/CFS criteria with PEM is causing such people to be excluded from research and even more so to be sent to a psychiatrist because they "do not have ME/CFS".
 
All within the same nuclear family!
 
So even the Canadian criteria are inadequate, unless we exclude these people but as Dr. Bell says it is surely likely they all have the same syndrome. Or do they?
 
Dr. Bell is primarily a Clinician and clinicians can be flexible about the criteria that define a syndrome. Their job is to help their patient. In research the criteria for selection become more important to the validity of the research. When research applies a criterion for patient selection we must be told precisely what they were. Not just say "by the Fukuda criteria". Some people may have myalgia (FM) and others might not. Some might have MCS and others may not.
 
I think all three of these syndromes (ME, FM and MCS) are homeostatic problems and we can learn a lot by comparing these groups. For example why do some of these (in all three) have PEM? Why do some people with ME not have FM? Why do some people with MCS not have PEM and some do? etc. If these people all exist within the same nuclear family study them all. There are answers in there. ~Posted by: IanH, Sep 13, 2015

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