Similar Misinformation On CFS & Fibromyalgia (Inflating The Numbers)

[PhoenixDown]

http://www.nhs.uk/conditions/fibromyalgia/Pages/Introduction.aspx

This official NHS source is making out this illness to be more or less everyday aches and pains that subside with, get ready for it...

• Exercise
• Talking Therapy
• Anti-Depressants

It's blatantly obvious that it's a waste-basket group at this point. It claims that around 4% of all people have it. This information paints a devastatingly inaccurate image of what I have to go through. If some friend of family member reads this, they are going to I just need to exercise and that I'm only being stubborn if I don't. There's no talk of this illness worsening through exercise.

There's almost no talk of any other symptoms apart from fatigue & pain, sound familiar?

Fibromyalgia can be a difficult condition to diagnose because there is no specific test

Completely misleading because now people are going to think that no test shows anything positive on these patients which is simply not true. Where's the talk of alternative testing?

 

[justinreilly]

I agree that this is propaganda similar to that targeted at ME and I have seen this type of stuff all over the place, as im sure you have. It makes me mad that pw Fibro have to suffer with oppression like pw ME do.

I have heard that Exercise can help Fibro (as opposed to ME). I don't know if that's true or just more CDC etc BS. I dont have fibro so i havent looked into it. even if it is true, if you have both ME and Fibro, I personally would not try any increase in activity because obviously, it makes ME worse.

As I said, I don't know enough about Fibro, but when I come across stuff that I am pretty sure is CDC etc BS about Fibro, I try to take a little time, if I can spare it, to counter it (eg in my book reviews). It seems likely to me that Pw Fibro are persecuted similarly to pw ME. I haven't come across a lot of Fibro activism, even though they have at least 4 times the number of sufferers. I really wonder why? does anyone have any comment on that?

 

[Valentijn]

I have heard that Exercise can help Fibro (as opposed to ME). I don't know if that's true or just more CDC etc BS.

My neighbor came down with FM about a year after I got ME, and around the same time that my fiance got Type I Diabetes (autoimmune cluster, anyone?). If she pushes herself at all physically, such as cleaning out her car thoroughly, she'll be unable to move at all for an hour or more and be in intense pain for a while.

She makes herself take gentle walks with her dog, but it doesn't sound like it helps particularly, except to work out stiffness in joints or muscles.

 

[taniaaust1]

Exercise I personally believe does help most FM patients esp with the stiffness they get etc and with that also can help the pain. My nanna has FM and she cant understand my ME at all as exercise helps her (which makes her try to push me to do things.. she pushed me to a complete collapse in a supermarket before). Over the years Ive known a couple of other FM people (without ME/CFS) and they also found exercise helpful.

I think a big issue is that many patients who have a FM diagnoses have also coexisting ME/CFS (the stats are over 25% of FM patients end up getting ME/CFS or already have it with it undiagnosed) and for many of those.. exercise can be not much good as all it does is trigger the ME/CFS which in turn just triggers off the FM more. (it thou can depend on the person..Ive come across some over the years with both which do find a very small amount of exercise helpful to the FM but without triggering off the ME/CFS).

 

[taniaaust1]

I just looked at the link that was provided http://www.nhs.uk/conditions/fibromyalgia/Pages/Introduction.aspx
and from what I can see the info looks good to me and does make it sound more then just aches and pains.

I thought the original thread post here was quite misleading as it didnt tell the real story of what was actually said at the other site eg medicines eg pain killers are also mentioned too and it states "medicines" so also this can include other drugs too. Here's info from the page. I suggest to check out the page for yourself

Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition which causes pain all over the body.
Fybromyalgia causes widespread pain and extreme tiredness. People with fibromyalgia may also have:

• difficulty sleeping
• headaches
• irritable bowel syndrome (IBS)
• muscle stiffness

Read more information about the symptoms of fibromyalgia.
What causes fibromyalgia?

The exact causes are not known, but there are certain changes in the way the body functions which have been noticed in people with fibromyalgia, including:

• disturbed pain messages
• low levels of hormones
• sleep problems

However, it is not clear what causes these changes in the first place and how they lead to fibromyalgia.

And when one clicks the link for "symptoms of fibromyalgia" .. many other symptoms then are listed there too. eg fibrofog, sensitivities to other things eg food, bright lights, not being able to regulate body temp, painful periods etc
.

How is fibromyalgia treated?

There is currently no cure for fibromyalgia. Symptoms are usually permanent, although they can vary in severity. However, there are a number of treatments that may ease symptoms and make the condition easier to live with. Treatment tends to be a combination of:

• medicines – such as antidepressants and painkillers
• talking therapies – such as counselling
• lifestyle changes – such as better sleeping habits and relaxation

In particular, exercise has been found to have a number of important benefits for people with fibromyalgia, including helping to reduce pain.

Id agree with all that and terms such as "such as" could just be another way of saying eg or example.. so it doesnt even state that all people with ME should have anti-depressants. It just gave a couple of examples of med things which could help. "Treatment tends to be" I think if one studied those with FM here.. one would found quite a few are having anti-depressents.

. .. also I did find some lifestyle changes helped my FM when I had it eg sleeping with a pillow between my legs so the FM trigger points at the knees wouldnt flare too bad, was one lifestyle change I made.

It claims that around 4% of all people have it.

PhoenixDown .. have you got another FM statistic there which actually shows that 4% to be wrong? (I'd personally believe that as half of those with ME have FM and three times as many people have FM alone without having ME/CFS.. and FM is also appears with some other illnesses too).

 

[PhoenixDown]

...and when one clicks the link for "symptoms of fibromyalgia" .. many other symptoms then are listed there too. eg fibrofog, sensitivities to other things eg food, bright lights, not being able to regulate body temp, painful periods etc

You are right that they provide this link: http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Symptoms.aspx which has more information, but the average person (family, friend, co-worker) might not dig that far, I wish I was joking but it's true.

It also says

It is possible for fibromyalgia to lead to depression. This is because the condition can be difficult to deal with, and low levels of certain hormones, such as serotonin, can make you prone to developing depression.

While it's true we can get depressed, there is no serotonin test applied to patients, so I think they are jumping the gun there, but I appreciated them saying depression is likely a secondary result of chronic illness, however this doesn't make up for their fatal flaws.

 

[PhoenixDown]

. .. also I did find some lifestyle changes helped my FM when I had it eg sleeping with a pillow between my legs so the FM trigger points at the knees wouldnt flare too bad, was one lifestyle change I made.

But they refuse to accept that some patients have the type of "fibromyalgia" that worsens with exercise, or sleep loss, not to mention worsens through co-existing "mcs" like symptoms. They refuse to believe any indefinite or permanent damage can occur to the brain or body, and instead choose to call the patients delusional or stubborn liars who don't want to accept to stigma or responsibility of doing exercise and changing their thoughts/behaviour. The results are devastating, I have been literally been crippled thanks to their ideology and non-science mascaraed as "evidence based medicine".

PhoenixDown .. have you got another FM statistic there which actually shows that 4% to be wrong? (I'd personally believe that as half of those with ME have FM and three times as many people have FM alone without having ME/CFS.. and FM is also appears with some other illnesses too).

4% is wrong when they paint that 4% as all having the same type of mild "fibromyalgia", or the type of "fibromyalgia" that improves through exercise, fixing "de-conditioning", and avoidance of boom & bust cycles. Look I'm really happy if someone overcome their suffering through exercise, positive thinking, pacing, and are now in full time work, or can now drive a car, etc, but this does not apply to me. For patients like me, these counter-productive illness-models take a hammer and destroy and support network I have. Now thanks to them, when ever something makes my symptoms worse, my family literally think I'm delusional. This has crippled me through lack of care and household adjustments, and I've read plenty of similar experiences to mine. The information on that website is misleading, at the very least by omission of different types of fibromyalgia (which most probably are different illnesses), but in any case the management has to be totally different in cases such as mine.

Addendum: There's no mention of mast cells, mitochondria, sleep studies, thyroid levels (and "normal range" controversies, additional immune tests, vitamin B12 injections, Co-enzyme Q10, the Methylation cycle, controversies with the NICE (or other NHS) guidelines regarding Fibromyalgia. I'll also repeat this - There's no respect for permanent worsening of symptoms. They paint a picture of any worsening being temporary or "all in the mind", they don't say it directly here, but it's what the reader/audience with take it to mean.

 

[PhoenixDown]

Now before our resident (name removed by moderator) swoops in and says the NHS is great overall and suits most of the population and is superior to most healthcare systems... I agree it is.

But I think it's fair to say that they have eff'd up royally on this one, and people like me are suffering unnecessarily.

 

[GcMAF Australia]

http://www.nhs.uk/conditions/fibromyalgia/Pages/Introduction.aspx

This official NHS source is making out this illness to be more or less everyday aches and pains that subside with, get ready for it...

• Exercise
• Talking Therapy
• Anti-Depressants

It's blatantly obvious that it's a waste-basket group at this point. It claims that around 4% of all people have it. This information paints a devastatingly inaccurate image of what I have to go through. If some friend of family member reads this, they are going to I just need to exercise and that I'm only being stubborn if I don't. There's no talk of this illness worsening through exercise.

There's almost no talk of any other symptoms apart from fatigue & pain, sound familiar?

Completely misleading because now people are going to think that no test shows anything positive on these patients which is simply not true. Where's the talk of alternative testing?

markers of inflammation
From http://www.ncbi.nlm.nih.gov/pubmed/23124693
"The levels of several inflammatory cytokines are abnormal in many patients with the fibromyalgia syndrome (FMS) and may play a role in its pathogenesis. The inflammatory marker C-reactive protein (CRP) is associated with the disease activity in patients with inflammatory rheumatic diseases, but its role in FMS is unknown. We undertook this study to determine whether high-sensitivity CRP (hsCRP) is elevated in FMS and whether its levels relate to key biologic or clinical measures. One hundred and five patients with FMS (1990 ACR criteria) and 61 healthy normal controls (HNC) at a ratio of 2:1 were recruited. The serum concentrations of hsCRP, interleukin-8 (IL-8), and interleukin-6 (IL-6) were assessed using enzyme-linked immunosorbent assays. The hsCRP levels were marginally higher in FMS than in HNC (p = 0.06) and its abnormality rate (>1.5 SD above the HNC mean) was significantly higher in FMS (25 %) compared with HNC (6.8 %) (p = 0.03). Serum IL-8 levels, IL-6 levels, and erythrocyte sedimentation rate (ESR) in FMS did not differ from those in HNC. Body mass index (BMI), ESR, IL-8, and IL-6 levels correlated with hsCRP levels in FMS. No associations were found between hsCRP and age, gender, ethnicity, or other clinical measures. Serum CRP levels were higher in FMS and significantly correlated with BMI, ESR, IL-8, and IL-6 levels, suggesting that inflammation may contribute to the symptoms in some FMS patients, particularly those who are obese. Weight loss and therapies directed against inflammation may be useful in the management of FMS patients with elevated hsCRP.

 

[GcMAF Australia]

If there is inflammation maybe look at Inflammation therapy, https://chronicillnessrecovery.org

 

[taniaaust1]

While it's true we can get depressed, there is no serotonin test applied to patients, so I think they are jumping the gun there, but I appreciated them saying depression is likely a secondary result of chronic illness, however this doesn't make up for their fatal flaws.

A few years ago.. I saw something on youtube (sorry I cant get youtube on my computer due to having a dial up connection so cant try to find it for you, I watching it on a friends computer), in which a expert in FM was talking at a medical conference about FM and giving all the latest info (at the time it had been filmed). Im sure in that they mentioned study(ies) which had shown the low serotonin was present (testing of serotonin in this patient group). He also talked about other advanced scienctific blood tests which show up other abnormalities in ME too.. sorrry cant think what they were right now..the abnormalities were quite complex ones.

So yeah thou they dont apply serotonin tests to patients, studies on this have actually showed that this patient group is usually low. (which is actually in contrast to some ME/CFS studies which have shown that serotonin can be high in ME/CFS). I do thou completely agree with you that depression is just as likely to be a secondary thing.

Also some of the antidepressant drugs can at times be used for FM symptoms too.. not just due to depression eg low dose amtriptyline (in doses less then the antidepressant amounts). *Note.. I certainly dont recommend that drug.

 

[taniaaust1]

But they refuse to accept that some patients have the type of "fibromyalgia" that worsens with exercise, or sleep loss, not to mention worsens through co-existing "mcs" like symptoms.

I dont see anything there at all about not treating FM patients sleep issues or that they arent important. They just say FM can be treated by medications.. so that can include sleep meds.

They refuse to believe any indefinite or permanent damage can occur to the brain or body,

Is there any proof at all that indefinite or permanent damage occurs to the brain and body in FM? (Im talking about just FM not ME/CFS).

I had very very severe FM at for several years .. my young children couldnt even hug me as it was that bad. All the FM trigger points flaring (and pain everywhere else too) and all the other FM symptoms, it was agony (even sheets on my bed on me hurt me and made the FM pain worst). I nowdays do not have any FM at all. I recovered completely from severe FM. Extremely severe FM did not do any permanent damage to me. I think you are confusing ME/CFS and FM together.

Where the doctors and medical profession are going wrong is by not paying consideration to the ME/CFS over the FM symptom if a person has ME/CFS. Its like if someone was obese and had a badly sprained ankle.. they wouldnt be told to exercise for the obesity even thou we know exercise is good for obesity. This is the situation which is happening to FM patients who have ME/CFS (like ignoring the other condition).

Doctors need to be considering everything that patient has and if trying to treat one condition... may risk making the other condition worst (leading to impacting on the first condition). The problem is with doctors just not paying attention the whole picture and ignoring ME/CFS.

 

[PhoenixDown]

Is there any proof at all that indefinite or permanent damage occurs to the brain and body in FM? (Im talking about just FM not ME/CFS).

Well is there any proof at all that indefinite or permanent damage occurs to the brain and body in ME/CFS? Are they all just "set backs"?

The definition of permanent here is simply anything we can't fix. Obviously it's extremely likely that humanity will one day understand these illnesses and be able to fix them, but right now in 2012, worsening doesn't go away, not for me anyway. I don't have those remission and relapse cycles or flares as such.

Where the doctors and medical profession are going wrong is by not paying consideration to the ME/CFS over the FM symptom if a person has ME/CFS. Its like if someone was obese and had a badly sprained ankle.. they wouldnt be told to exercise for the obesity even thou we know exercise is good for obesity. This is the situation which is happening to FM patients who have ME/CFS (like ignoring the other condition).

Doctors need to be considering everything that patient has and if trying to treat one condition... may risk making the other condition worst (leading to impacting on the first condition). The problem is with doctors just not paying attention the whole picture and ignoring ME/CFS.

It seems like you're ok with the idea of damage, but ONLY if the patient also had ME, no other mystery (or undiagnosed) illness behind these symptoms sustains permanent damage according to you, which I simply can't agree with.

If you look at the article there's very little about worsening, and no mention of tiny things worsening the patient few months.

The symptoms can also come and go over time, although it is unlikely they will ever disappear altogether.
Your symptoms may sometimes get better or worse, depending on factors such as:

• changes in the weather
• your stress levels
• how physically active you are

Think of what those bullet points will imply to people reading them. It also doesn't validate the patients whose symptoms don't come and go over time, implying you just have to wait it out. This way no body has to take responsibility for making patients like me worse through ill management or disbelief, because they think it will just wax and wane, and go back to how it was before.

Had you ever experienced localized and indefinite worsening of symptoms or was your "fibromyalgia" all over your body?

Congrats on healing your severe FM by the way.

 

[PhoenixDown]

Also the lady in the video helped her fibromyalgia most by "being positive", "managing", relaxation, "visualization", and "guided imagery". This was the only video on display and therefore shows a very imbalanced viewpoint.

She says it effects soft tissues - muscles, ligaments, tendons, but never mentions those getting worse, only "pain" getting worse. Remember pain is an abstract term said by many to be "in the mind". The underlying illness behind the pain is not said to get worse, this is a crucial point.

According to the video the thing that "turned her life around" was a management program that helped her by "talking to them", "finding ways to be positive, and just doing things like relaxation".

At no point did she mention something like her wrists permanently being more sensitized to pain & became permanently weaker due to driving for 3 minutes. Nothing about her knees and ankles getting permanently worse because she walked up the stairs an extra few times. Not so much as a mention of a week long temporary flare up from those things.

The over all impression from the video is that Fibromyalgia is an illness where you can push through the pain usually with will power or other psychological techniques, and that there is no joint or muscle weakness, nor is there any neurological, metabolic, or other dysfunction preventing a person from getting a lot better.

 

[taniaaust1]

Well is there any proof at all that indefinite or permanent damage occurs to the brain and body in ME/CFS? Are they all just "set backs"?

No.. they arent all just set backs.. real damage can occur.

There is some proof out there of actual permanent damage occuring to body/brain in ME/CFS. eg people wouldnt die from that illness otherwise.. I view death as permanent . Some have ended up paralysed unable to move and their bodies start all shutting down. There are many people with ME/CFS around the world in that situation (one family has 2 or 3 children like that.. I remember years ago seeing the youtube video of them stuck in their beds..one had been there for 7 years).

I also once met a ME/CFS person who ended up with a PERMANENTLY paralysed hand. She'd keep pushing herself using her hand long after the pain and the exhaustion in it started and that paralyses happened... doctors said there was damage there then which they just couldnt explain. She never regained the use of her hand back.

Also as mitochondrial damage has been shown in ME/CFS.. that can actually too cause very real damage. Studies have also shown in ME/CFS that with activity.. our bodies are actually malfunctioning with less oxygen going to our cells rather then more like as should happen. Lack of oxygen certainly could damage something.

All these things above are why I say permanent damage can happen in ME/CFS.. if I see studies or similar findings for FM or hear FM patients actually say they've got permanent damage from just the FM.. I'd then be agreeing with you. Ive spoken to many FM patients over the years and none have ever told me they suffered permanent damage from just the FM.

It seems like you're ok with the idea of damage, but ONLY if the patient also had ME, no other mystery (or undiagnosed) illness behind these symptoms sustains permanent damage according to you, which I simply can't agree with.

Im very willing to change my views if I see any real evidence for "permanent" damage in FM. Ive never heard of someone with just FM patient dying from exercising (unless it was a ME person) or becoming actually permanently paralysed due to it. Note Im not saying nothing is going on with FM as something obviously is so dont take this post to imply that.. FM patients just wouldnt be in pain if nothing was going on.

Had you ever experienced localized and indefinite worsening of symptoms or was your "fibromyalgia" all over your body?

I was originally all over the body... so many different places, some hurting more then others eg my finger joints hurt less then the FM flare point at knees, I just felt like a ball of pain.. as it improved thou it went more localised in various places. It certainly could worsen.. if i had a more crashed ME day (thou I was in like permanent crash anyway at that point of time but I was capable of crashing further) the FM pain would get even worst. I also had a lot of that pain which moves about too.

It also doesn't validate the patients whose symptoms don't come and go over time, implying you just have to wait it out.

It does thou validate that group of people who have symptoms which dont come and go eg.

"Your symptoms may sometimes get better or worse,"

I personally took that quote as they used the word "may" to implies that many actually dont have the FM coming and going thing happening but some do. So I took it as a validation of both groups..those who have coming and going symptoms and those who dont. It didnt validate either group over the other group but validated equally.

Congrats on healing your severe FM by the way.

Thanks, for me it had a lot to do about lifestyle changes.. eg not exerting so not to flare up the ME more, which in turn ME flared up the FM more.

I hope you find something which helps your FM[/quote][/quote]

 

[PhoenixDown]

No.. they arent all just set backs.. real damage can occur.

There is some proof out there of actual permanent damage occuring to body/brain in ME/CFS. eg people wouldnt die from that illness otherwise.. I view death as permanent

. ...

Also as mitochondrial damage has been shown in ME/CFS.. that can actually too cause very real damage. Studies have also shown in ME/CFS that with activity.. our bodies are actually malfunctioning with less oxygen going to our cells rather then more like as should happen. Lack of oxygen certainly could damage something.

Mitochondrial damage also exists in Fibromyalgia patients (I'm living proof), it is NOT a defining characteristic of either ME/CFS or Fibromyalgia, since you agree it is damage, then perhaps you'll agree Fibromyalgia patients sustain damage? It seems to me like you are ideologically bound to seeing the damage as part of ME/CFS instead. you will now want to say that "No because Mitochondrial problems mean you have ME/CFS too", but like I said it's not a defining diagnostic characteristic. "Less oxygen going to our cells", again isn't unique to the ME/CFS group.

I could go on & on about substance P and other abnormalities in Fibromyalgia patients, but I don't think you'll classify any of it as damage in the Fibromyalgia group, but you'll want to classify things as damage in the ME/CFS group. It seems you'll draw the line between abnormality and damage based on an ideology of ME/CFS being a damaging illness and Fibromyalgia not being so.

At the end of the day if symptomatically, an event causes an untreatable worsening of functioning or pain, and does not heal, then it is by my definition, a form of damage.

It does thou validate that group of people who have symptoms which dont come and go eg.


"Your symptoms may sometimes get better or worse,"


I personally took that quote as they used the word "may" to implies that many actually dont have the FM coming and going thing happening but some do. So I took it as a validation of both groups..those who have coming and going symptoms and those who dont. It didnt validate either group over the other group but validated equally.

A much more accurate way to have put it would have been to say "The symptoms can also come and go over time, although it is unlikely they will ever disappear altogether. However some FM patient's symptoms remain perpetually, and a significant number of patients find that their symptoms worsen indefinitely over the years"

All these things above are why I say permanent damage can happen in ME/CFS.. if I see studies or simiar findings for FM or hear FM patients actually say they've got permanent damage from just the FM.. I'd then be agreeing with you. Ive spoken to many FM patients over the years and none have ever told me they suffered permanent damage from just the FM.

They may not use the word damage (just like many ME/CFS patients may not use the word damage) but they do report symptoms indefinitely worsening after an exertion of some sort, or a side effect from a medication, or a bout of very poor sleep, etc. Some of them (like me), never recover from these things whilst other FM patients do seem to recover back to their old level of Fibromyalgia symptoms.

This is one of the crucial things that is missed off the NHS article. This is most probably because the prevailing (but erroneous) view is that all the fibromyalgia patients who didn't recover failed to do so due to faulty illness beliefs, poor mood, being stuck in a “sick role”, or ongoing stress alone.

 

[barbc56]

I also have a dual diagnosis of fibromyalgia. Fibromyalgia is now recognized by the College of Rheumatology in the United States, so it's slowly, very slowly, being recognized. I see a neurologist for this and the CFSME.

For a diagnosis you have to have pain in four quadrants of your body. It's a central processing condition where your brain is telling you that you are in pain but there is no actual damage to the muscles. IMine is an ache down to my bones which drat does not affect the joints but patients may experience pain in the surrounding muscles which feels like it's coming from the joints. I do know people who have arthritis along with the FM. I was lucky that I was first diagnosed by a well known doctor who has done research in FM. In fact half of his practice is research.

As for exercise, I find that when I do, it's more of a reflection of how I am feeling. I do try to walk but TBH, I don't as much as I really could. Sometimes I crash, sometimes I don't. But I feel that some activity, however small will keep me from becoming deconditioned which is very different than FM/ME/CFS. Even with people in comas get some kind of physical therapy.

I have a very good source about Fibromyalgia which I sent to my family which states definitely that FM is not psychiatric.I have to look for it as I just switched to Google Chrome and not all of my bookmarks transferred.

BTW, Antidepressants can be prescribed for pain and I learned that the hard way. Long story but can share if asked. Also serotonin in the blood is not an accurate measurement of the amount of serotonin in the brain. However it doesn't just have to do with the amount of serotonin but how effectively serotonin is processed in the brain.

Now if we could only get the same time of recognition for ME/CFS.

Barb C.:>)

 

[taniaaust1]

"Less oxygen going to our cells", again isn't unique to the ME/CFS group.

Do you have any links to a study for me so I can see that oxygen issues have been shown to be in FM by studies? I tend to go by good science when I get my views on things and would be interested to see these if Im not correct in my thinking. (I just tried doing a quick search but didnt find an actual FM study showing less oxygen, just rather a lot of sites which talk of it as a hypothesis that low oxygen is involved). On one site I saw mentioned that there hasnt been a good study yet done on this. So if you know of a study showing that please post the link.

I could go on & on about substance P and other abnormalities in Fibromyalgia patients, but I don't think you'll classify any of it as damage in the Fibromyalgia group, but you'll want to classify things as damage in the ME/CFS group. It seems you'll draw the line between abnormality and damage based on an ideology of ME/CFS being a damaging illness and Fibromyalgia not being so.

I know about substance P in Fibro and that FM has it has other abnormalities. I used to have it hence I did a lot of research it in the past eg low serotonin is usually found in Fibro too.. a fair time ago thou so there may be new scientific findings since I last did any FM research. (there is or at least was a very good lecture by a top expert in Fibro on utube I watched years ago on its abnormalities).

I certainly havent been saying that there is no abnormalities in Fibro... Substance P I dont know if it causes any actual damage to the body..If Im remembering correctly it is neurotransmitter which heightens pain response.. so if anything "may" be being protective to the body. Fibromyalgia just like ME/CFS has its very own scientific abnormalities.. and substance P is one of those which isnt found in ME/CFS but in Fibro except of cause when fibro CFS patients have been in the study. http://www.ncbi.nlm.nih.gov/pubmed/9839828

At the end of the day if symptomatically, an event causes an untreatable worsening of functioning or pain, and does not heal, then it is by my definition, a form of damage.

I thought we were talking about things which caused "permanent" damage (that what we first was discussing). But yes.. your definition of what damage is, is different to the definition I use for damage which I view as a physiological thing. (im very black and white)

 

[PhoenixDown]

dam·age

/ˈdamij/
Noun
Physical harm caused to something in such a way as to impair its value, usefulness, or normal function.
__________

Damage is not limited to tissue damage or even brain damage. The human body is a system of systems, a supremely complicated machine. If anything is indefinitely broken or put out of whack and we don't know how to fix it, then it is called damage as defined by the English language.

The trial you linked only sampled 15 people and neglected to mention in the abstract which criteria it used, in any case 15 isn't enough people to say with much certainty that there isn't an overlap. This is irrelevant since any abnormality you can prove to be unique to ME/CFS, would in no way negate damage occurring in those labelled with Fibromyalgia or any other illness, despite a lack of agreed upon objective abnormalities in Fibromyalgia. Absence of evidence is not evidence of absence, just because we can not yet detect this damage, it doesn't mean that it is not occuring. At the end of the day some patients report that exercise, interventions, or exertion have indefinitely worsened their symptoms.

You seem to be trying to imply that an abnormality isn't damage, but as I've said if something made you worse and we can't fix it, and it's impairing or debilitating then it is damage.

Furthermore I find the idea that: if one doesn't have an illness you can die from, then you can't sustain damage in relation to your illness, to be quite insulting as well as incorrect. However I'm thick skinned and would rather the moderators leave this thread alone since there are valuable points raised here and even more valuable debate to be had. It would only be confusing to split this thread.

Do you have any links to a study for me so I can see that oxygen issues have been shown to be in FM by studies?

The "Less oxygen going to our cells" is a point that you raised but did not provide links for. I don't wish to contest this abnormality as such because like I've already mentioned, it does not negate damage occurring in those labelled with Fibromyalgia. Furthermore if studies use loose Oxford or Fukuda criteria, or even the CCC ME/CFS criteria, the very same patient could still fulfil and choose a Fibromyalgia diagnosis even if prior, they were involved in a ME/CFS trial. The CCC mentions Fibromyalgia as comorbid, but I can't see how it truly excludes it. Even under the CCC a patient could still "jump ship" from CFS to Fibromyalgia and vice versa without changes in their illness.

Substance P I dont know if it causes any actual damage to the body.

Substance P is in your body (spine I believe), it's just as much a part of you as your flesh.

You've still not addressed the fact that Mitochondrial damage also exists in Fibromyalgia patients, and that you implied Mitochondrial damage was "real" damage of somesort, yet refused to believe damage occurs in Fibromyalgia.

I thought we were talking about things which caused "permanent" damage

I use permanent to mean it won't heal. For example a bruise will heal and is not considered permanent, though lately I've also used the term "indefinite" in place of "permanent", neither will heal.

 

[taniaaust1]

The trial you linked only sampled 15 people and neglected to mention in the abstract which criteria it used, in any case 15 isn't enough people to say with much certainty that there isn't an overlap. This is irrelevant since any abnormality you can prove to be unique to ME/CFS, would in no way negate damage occurring in those labelled with Fibromyalgia or any other illness, despite a lack of agreed upon objective abnormalities in Fibromyalgia. Absence of evidence is not evidence of absence, just because we can not yet detect this damage, it doesn't mean that it is not occuring.

Then how is it known the damage is "permanent" then if there no objective abnormalities to show something being damaged could lead to being permanent.

At the end of the day some patients report that exercise, interventions, or exertion have indefinitely worsened their symptoms.

That isnt what Ive been debating with you at all.. I no doubt some may feel worst after exercise even in FM. That is different to what Ive been debating about whether permanent damage could be done or not in FM.. till I know those who have had that occur eg patient evidence of permanent damage (not ones who are misdiagnosed ME/CFS cases.. we are just talking of FM alone who obviously dont have ME/CFS) or till I can see FM study showing abnormalities my views wont change that they are two different illnesses with possibly different consquences.

You seem to be trying to imply that an abnormality isn't damage, but as I've said if something made you worse and we can't fix it, and it's impairing or debilitating then it is damage.

Furthermore I find the idea that: if one doesn't have an illness you can die from, then you can't sustain damage in relation to your illness, to be quite insulting as well as incorrect. However I'm thick skinned and would rather the moderators leave this thread alone since there are valuable points raised here and even more valuable debate to be had. It would only be confusing to split this thread.

Once again I will state we were originally talking about "permanent damage" not something which "can" be temporary.

I never said "if one doesnt have an illness you can die from, then you cant sustain damage in relation to your illness". If ive stated that anywhere please tell me where I made that statement as that isnt something I believe at all and if it was said it would have to be a post mistake of mine. I think you've "unintentionally" twisted what Im saying to imply something else (which you believe im saying but I arent) I certainly dont believe what you've just implied Ive been stating.

The "Less oxygen going to our cells" is a point that you raised but did not provide links for.

The possibly of damage to exercise has been shown in ME/CFS by studies.. If you want to see that.. there is a chart in the canadian consensus definition in which lists the responses to exercise in a normal person and the responses to exercise in a ME/CFS person and the studies references are all listed there. Biologicial studies have shown issues with exercise. Have biological studies shown this to be the case in FM too?

You've still not addressed the fact that Mitochondrial damage also exists in Fibromyalgia patients, and that you implied Mitochondrial damage was "real" damage of somesort, yet refused to believe damage occurs in Fibromyalgia.

Im not going to say that mito damage exists in FM and "guess" that is going on (as without studies..that is all we can do is "guess". Im too black and white in my thoughts to be "guessing' things without any proof), .. hence why I asked for some links as there should be some study showing this if it is so. (if someone has provided a link and Ive missed it or forgot.. please show me again as I like to be accurate in my thoughts). If anyone else has been reading mine and Phoenix's debate here.. and u know of a link.. would you mind putting it up for me.. thanks. I would like to see these.

Phoenix.. lets leave this debate.. I think its been going on too long and if you cant provide links.. Im not going to change how I think about the two illnesses being different with possible different consequences (thou with similarities of cause too). I think its overly draining us both so at this point are going to leave it and wont be responding to anymore of your responses in this thread.

Have a nice day.