Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 6, 2014.
I disagree. The pathogen I suspect does not go away but sadly there is no test for it.
PS: For some reason I'm surprised to have Shepherd contribute an article here. I thought we were a weird backwater.
Welcome to PR!
You can believe what you want and not get tests on yourself as a consequence. The fact is that multiple highly respected researchers are finding multiple ongoing known infections in PWME. Of course you'll never find them if you don't test for them.
Immune testing (considered unnecessary by Shepard) is also indicating ongoing currently unidentified pathogens (as @Iansbergen mentioned) in some patients. Immune testing has shown immune dysfunction that can benefit from immune modulators/treatments. Of course we'd never know that if we did "unnecessary" immune testing, either.
So fine, don't get pathogen or immune testing if you don't want to believe ME/CFS is of infectious origin, but do the rest of us a favor and don't suggest that testing isn't beneficial for PWME.
So your theory of not treating Infections because we dont know the real cause is like saying hiv they shouldn't treat coinfections as they arent the main issue. U would have alot of hiv people die of cmv, mycoplasma etc.
"blood tests are only valuable for identifying altnerative diagnoses and research"
Ok, so when you don't do any additional testing, how will you know your diagnosis is correct?
And yes, testing is valuable for research, but also for the clinician treating you.
If he or she doesn't look into your immune problems, endocrine problems, viral load, bacterial load, gut dysbiosis, exercise capacity, ... any further than what is suggested in this article, how will he or she be able to handle you and your disease properly?
An active viral infection doesn't mean you don't have ME. It's typical for ME.
But ... this viral infection could explain your immune problem or vice versa.
Should you put such patients on a treadmill and let them exhaust themselves knowing they have an ongoing infection with high cytokin loads or should you be very very cautious?
I would have thought any MD would want to know this kind of impartant info in order to help his patient and not send him or her totally off the cliff and into bed for many years to come.
I agree with a lot of what you say, but I don't think that what doctors do (or don't do) has much influence on what researchers do (or don't do). More sadly perhaps (although clinical data are potentially invaluable research info), research findings take a very long time to be translated into clinical practice. They are two very different lines of work.
I see where your coming from but the research we have going on now is mostly done by gp's with an interest in cfs/me and then go into research, probably due to the lack of efforts from other research avenues. Dr k, Dr P, klimas, kdm etc
i guess its a 2 way street, its gp's generally in contact with patients and where it all begins, generally researcher dont see patients first up but stimulated to research by doctors trying to treat these patients??
Its a can of worms?? but the dr/researchers above are using tests to help them diagnose and treat cfs/me. We are only just beginning to see there efforts to stimulate more researchers.
Before anyone else misinterprets or misunderstands what this MEA information on blood testing is for:
It was produced as a very basic MEA magazine item to cover ALL the routine blood tests that EVERYONE should normally have here in the UK before a diagnosis of ME/CFS is considered or made.
It is NOT designed to be a comprehensive list of all the blood tests that may need to be arranged – eg Lyme disease testing; neuroendocrine testing for Addison’s disease, pituitary disorders; further investigation of liver function if minor abnormalities are found; serum hydroxyvitamin D in those at risk of vitamin D deficiency; comprehensive autoimmune disease screen. This list is long and will depend on the history given by the patient and the examination findings obtained during a proper clinical assessment. There just wasn’t the space to include all of these tests, along with when they could/should be used, in ME Essential.
However, all of these additional tests are all covered in considerable detail in the sections (7 pages of A4) covering differential diagnosis, clinical assessment and investigations in the MEA purple booklet:
Regarding the use of thyroxine: this has to prescribed with great caution in people who have/may have adrenal insufficiency/hypocortisolaemia (as may be the case in ME/CFS) and should NOT be prescribed in such circumstances in people who have normal thyroid function tests.
Regarding tests for Lyme disease: almost a whole page of the MEA purple booklet is given over to Lyme disease, including NHS and private laboratory testing. Some of the commercial tests are not reliable and I would suggest that people have a look at a recent BBC documentary when it appears on BBC iplayer:
……where a perfectly healthy BBC reporter I know was tested ? positive using a private sector laboratory.
Thanks for clarifying. A hot topic here
I disagree that immune testing implies ongoing unidentified pathogens. I fear I'm fighting against a lot of years of belief of ME/CFS as being of infectious origin but I believe the immune activation in the absence of any consistent pathogen findings over a 20+ year period means we should perhaps be looking more towards a disease of autoimmune pathology rather than of infectious. Immune testing is I believe helpful in showing that there is something not working as it should but it's a silly jump in my opinion to automatically assuming that something is a pathogen that has evaded detection for so long. I believe unfortunately that people "want" there to be a virus at the heart of the conditions purely because it is a simple explanation but that's not to say it's the right one. Perhaps the hunt for viruses will be looked back upon as holding back the advancement of our understanding of the condition. I also think our current understanding of the inner workings and interconnections of the immune system make it very difficult to treat immune dysfunction - I'd go as far as to say that "immune-modulators" are very unlikely to get at the heart of the condition purely because we don't yet know what in particular needs targeting, with something as complex as the immune system a shotgun approach isn't going to get you very far and could indeed make things worse. With regards to the findings of known infections, these are very often found at similar levels in the normal population, the question is why these known infections begin to cause a problem and that is likely the immune dysfunction we know appears in ME - this is very common in most diseases that cause a dysfunctional immune system and does nothing to support the notion of ME/CFS as of infectious origins.
I want to make it clear that I'm not putting down these tests and treatment, I am however saying that the clinical evidence simply isn't there to support their use hence it comes down to the opinion of the patient and doctor. Co-infectious are something frequently discussed and I do believe they play a part in some people but only as a later result of the observable immune dysfunction, which incidentally I only feel is unnecessary purely because we don't yet know how to interpret the results in, a think a similar example would be testing thyroid hormone levels without having a reference range - the results are simply of no use for treatment other than giving a very broad "somethings not right". Treating these co-infections may help symptoms a little but it's not going to solve the bigger issues at the heart of the condition - just as treating co-infections in HIV/AIDS does not cure the condition overall.
treating co-infections in hiv reduces mortality.
Low nk function is a common finding in cfs/me, if u look at the role of nk cells they kill viral infected cells as well as cancer infected cells. Its just common sense that if apart of your immune system isnt working then infections are going to play a big part.
Also i dont think we are saying herpes viruses are the cause of cfs but occur due to the immune dysfunction. If it had no bearing then why do we see improvement of some cfsers with antivirals treatments which are backed up by improved immune/infection labs. Herpes virus reactivation is common in other illness with immune dysfunction supression. Maybe for some its a hit and run but for others many of these infections are ongoing. This brings us back to sub groups again.
I am one of those patients who got their lives back way back in 2002 because I found a knowledgeable private Endo who after getting these so called waste of time tests done for me showed I had a severe adrenal and thyroid problem and started on hydrocortisone and dessicated thyroid.
It soon felt like I had my life back, not a cure but I continue being able to do so much more than the majority of people with ME/CFS. Only today I brought a friend round to my house who has Fibromyalgia plus ME/CFS and no treatment. She seriously cannot go on like this but I recognise that she has severe adrenal issues and probably thyroid involvement too so I am going to get a saliva test done for her and once we get the results she will probably self treat. That is how desperate we can be here in the UK because the NHS has let her down. She feels she has no quality of life whatsover, she has lost everything and doesn't want to continue living like this.
I would like Dr Shepherd to see just what I can do in a day. Very shortly tonight I will be doing my jigsaw but as I put on dance music to help my concentration I know I will just have to get up and dance, I cannot stop myself and everytime I do this I feel such delight and joy.
This is on top of me already doing 5371 steps today (according to my FITBIT monitor) which included a good walk with my dog, shopping and having the visit from my friend.
Treating the thyroid and adrenals if indicated can literally give you back a life worth living.
But Dr Shepherd does recommend adrenal and thyroid tests - repeated ones in fact. A frequent problem is that UK doctors are not doing them, hence the MEA's offer to send them the booklets. The booklets may not be perfect, but I think they have the potential to improve GPs' woefully-limited understanding and treatment. I have requested one to be sent to my GP.
Here is just one example (=Sjogren's syndrome) from the Differential Diagnosis section of our MEA booklet for doctors of how I go into considerable detail about the need for proper and detailed investigation for a long list of conditions that are misdiagnosed as ME/CFS.
Sjögren’s syndrome (SS): A number of viruses, including Epstein-Barr virus and endogenous retroviruses have been implicated in the causation of SS, as well as an uprated cytokine profile. The commonest presenting features are dry eyes (causing a gritty sensation) and a dry mouth. Vaginal dryness (causing painful intercourse) and respiratory tract dryness (causing a dry cough) may also be present. Debilitating fatigue and/or arthralgia is present in a significant proportion. Anti-Ro and/or anti-La antibodies are found in approximately 75% of SS patients. Hypergamma- globulinaemia with raised immunoglobulin G (IgG) and/or IgM is common. A Schirmer test assesses occular dryness.
Which other clinical guideline on ME/CFS goes into this sort of detail?
Well an immunemodulator saved my live and very slowly but steadily improves my health. It was a calculated gamble and I still do not regret it.
As for autoimmunity, the pathogen I suspect does not induce an adaptive response. So how can it be autoimmunity????
I do not know what you have but if you have what I have you are just at the beginning of your journey.
I doubt you know more about it than my immunologist who says my immune dysfunction pattern is clearly indicative of an ongoing infection, even when we've (temporarily) cleared all the known, testable infections. She says it looks like I have an ongoing infection with something we can't yet detect. In my mind, her training and experience in patterns of immune dysfunction and what they might mean trump your belief.
Naturally, I have no interest in changing your belief. You're entitled to believe what you want. I'm a researcher by inclination and training and prefer scientific data to belief, so I'm going with established data for myself.
I think we are experiencing several layers of confusion here. The first is in interpreting the results of pathogen testing in ME/CFS. Research has not (yet) found a single pathogen in all ME/CFS patients. It is NOT true that NO pathogens have been found in ME/CFS patients. In fact, there are quite a few known pathogens found frequently in ME/CFS patients. It's just not the same single pathogen in everyone. So it's not that NO pathogens are found, it's that a unique universal pathogen has not been found. Big difference.
A second layer of confusion lies, I think, in confusing cause and effect. Most of us would agree that no single pathogen has been found to be the cause of ME/CFS. Nevertheless, having ME/CFS (whatever the cause) and the resulting immune dysfunction results in multiple pathogens in PWME.
Those pathogens need to be identified and treated. Just because they are not the primary cause of the illness doesn't mean they shouldn't be treated. In fact, they may be the cause of the majority of our symptoms.
Which is where a third layer of confusion comes in. The primary cause of the illness does not need to be the infection or condition that causes the majority of, or the most serious, symptoms. Treating symptoms and secondary conditions can make a vast improvement in the patient's condition even when the primary cause cannot be addressed.
We have HIV/AIDS as a model here. Patients were first identified because they were suffering from reactivations of common infections in the herpesvirus family, among other known infections. Sound familiar? It was determined that none of those infections was the cause of AIDS in part because all patients did not have the same infections. Sound familiar? Nevertheless, those infections were causing the vast majority of the symptoms in AIDS. Patients were not dying from the immediate effect of the HIV virus, they were dying from the secondary infections that their bodies could not control because HIV was destroying their immune systems' ability to fight those infections.
What did they do in the early days of AIDS treatment before HIV was identified? They treated the secondary infections which were causing most of the symptoms. This was long before they knew why these peoples' immune systems were misbehaving. It was long before they had any clue what the unknown infection was. While they couldn't stop the damage to the immune system, not knowing the cause, they could vastly improve quality of life and reduce damage to the body done by the secondary infections.
We don't have to know the primary cause of the illness to know that patients have many secondary infections and that those infections need to be treated to prevent further damage to the body and to reduce symptoms. But if we refuse to test for and treat those secondary infections simply because they are not the primary cause of the illness, we are fools. Infections are infections. The damage is done whether or not the infection is primary or secondary.
There is no concrete evidence that ME/CFS is not infectious in origin. It appears not to be caused by a single currently known pathogen, but there's even some question about that. We don't know everything about the interaction of infections with genetic and environmental factors. In fact, there's much we don't know about the infections we are already aware of. And of course, there's still the possibility of infections that have not yet been identified.
ME/CFS could be the result of hit-and-run damage by multiple pathogens. That might be the root of an autoimmune situation. It could be the result of an ongoing infection that we are currently unable to detect, as in the HIV situation not that long ago. It could be caused by something else entirely. We simply don't know at this time.
I'm certainly not jumping to the conclusion that the primary cause of ME/CFS is an infection. I'm just not jumping to the silly conclusion that it's definitely not. Nor am I jumping to the silly conclusion that medical science has already detected every pathogen that exists. Now that IS silly.
The cause is unknown. It could be any number of things. There are quite a few possibilities currently being researched. What's silly at this point is jumping to conclusions about what is or is not the cause at this point in the research.
I doubt anyone "wants" a virus to be at the heart of the condition simply because that's a simple explanation. First of all, it is far from a simple explanation. If it IS an infection (which is far from certain) it's probably a difficult and complex infection probably in a difficult to find location like the nervous system or the gut. (Ian Lipkin is no fool)
What most of us "want" is not a simple explanation, but broad and open-minded research which includes investigation into the possibility of a pathogen at the root. What we do NOT want is the dismissal of a likely avenue of research because of ridiculous assumptions and poor interpretation of current knowledge.
And there you've given a good explanation for why extensive immune testing is valuable for PWME. A shotgun approach to treating immune dysfunction is certainly problematic. Much better to have some knowledge -- through individual testing -- of what's malfunctioning in your own individual immune system and treating accordingly when possible.
For example, my daughter and I do not have identical immune dysfunctions, therefore we don't use the same immune treatments. How would we know what to do if we didn't have the test data to work from? Without testing, the choices are to do nothing or risk doing the wrong thing. Why should we not test when tests are available to guide treatment?
Quite a few people who have treated these co-infections will argue that they help symptoms only "a little". In my family alone, my uncle went from mild/moderate to full remission with antiviral treatment. My daughter was so sick she would have had to drop out of college during her first year when she got antiviral treatment. Now she's in remission and in graduate school in engineering. I went from bedbound and unable to read to up all day and tutoring 15-20 hours a week. While I'm not in remission, I don't consider going from bedbound with no life worth speaking of to being a functioning adult earning some income a "little" improvement. I can't do everything I want, but I don't feel like I constantly have the flu. I can read. I can put together lucid sentences. I'm not in constant pain. I don't call that a "little" improvement in symptoms. I call it getting some of my life back.
We are not the only people who have had more than "a little" improvement from treating co-infections. Dr Petersen would not be treating patients with antibiotics and antivirals if he was only seeing "a little" improvement from them. Nor would Dr Klimas, or Dr Montoya, or Dr Kogelnik, or Dr DeMeirleir. They are using them because they see significant improvements.
No one is suggesting, especially those doctors, that pathogen treatments cure ME/CFS. We don't have a cure yet. But to avoid (or worse, deny patients access to) treatments that can provide significant improvement simply because they are not a cure for the primary cause is beyond stupid.
Testing for pathogens and immune dysfunction is NOT unnecessary. It is critical for guiding appropriate treatment to give significant quality of life improvements in PWME.
How about the ME/CFS Primer for Clinical Practioners?
Not that I'm suggesting there's any excellent clinical guideline. That's something we're sorely lacking.
Both cover fairly similar ground but the MEA purple booklet (52 pages with around 300 referenced papers) goes into far more detail on differential diagnosis/misdiagnosis and investigations.
Yes, both are useful documents with different focuses. Differential diagnosis is critical, as is treatment.
Hopefully someday we'll have a single document that does a superb job of both. That's a very big challenge, though, and maybe not possible.
You can also try a Google Site Search
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