Why?

[RKB]

It continues to baffle me, why all the nonsense which somehow associated itself with this disease continues to hold any sway whatsoever.

Diseases which cause "mental" symptoms as part of their symptomography - diseases like syphilis, Creutzfeldt-Jakob, etc. - I can see how diseases like that could easily be mistaken for a mental illness, since they cause mental symptoms. M.E. does not even cause any mental symptoms. It does not even resemble any mental illness. It is a viral infection which follows a perfectly straightforward pattern of latency and replication cycles.

The science is there: we know which pathogen causes this disease. We have a test which can retrieve samples of that pathogen in the gastric tissue of those who have it. We have a brain scan capable of showing the perfusion injury and resulting ischemia in precisely the areas which correspond to the symptoms it causes (e.g. difficulty with even small movements from damage to the central gyrus, the brain's motor control area).

There is no mystery about what this disease is, about the damage it causes, or about the symptoms which result. No physician in their right mind would send an Ebola patient to be evaluated psychiatrically or psychologically as any part of their treatment plan! You don't treat HIV/AIDS with psychiatry; you treat it with antivirals. Because it is a viral infection. Viruses don't choose which people they will infect based on who they are as people.

Any physician, specialist, individual patient layperson or caregiver, insurance company rep, or government official who would even consider entertaining that nonsense as a possibility is flagrantly mentally ill.

It is long past time to lay the flagrant insanity of that nonsensical absurdity completely to rest.

 

[TJ_Fitz]

M.E. does not even cause any mental symptoms. It does not even resemble any mental illness. It is a viral infection which follows a perfectly straightforward pattern of latency and replication cycles.

The science is there: we know which pathogen causes this disease. We have a test which can retrieve samples of that pathogen in the gastric tissue of those who have it. We have a brain scan capable of showing the perfusion injury and resulting ischemia in precisely the areas which correspond to the symptoms it causes (e.g. difficulty with even small movements from damage to the central gyrus, the brain's motor control area).

There is no mystery about what this disease is, about the damage it causes, or about the symptoms which result. No physician in their right mind would send an Ebola patient to be evaluated psychiatrically or psychologically as any part of their treatment plan! You don't treat HIV/AIDS with psychiatry; you treat it with antivirals. Because it is a viral infection. Viruses don't choose which people they will infect based on who they are as people.

You are way ahead of me. What pathogen is it of which you speak?

 

[pbyr]

Ignorance is the only thing I can think of. I quit seeing doctors a long time ago just out of the sheer frustration (this is my choice and not an endorsement of others to do the same).

 

[Jellyfish5432]

Empathizing with someone is harder than simply writing him/her off and pushing the blame on him. You need to be respectful of other experiences and their perspective.
That this image has continued to hold, despite research proving that ME/CFS exists, shows that the issue is about more than science. It is about honestly empathizing with people, about accepting that there are flaws in the system.
You need to accept insecurity as an individual, need to be able to say, 'medicine is wrong here', instead of blindly following authorities, as a doctor need to be able to say, 'I don't know', or 'I can't help you'.

That is hard for many people. Many people rely on systems that give them security and tell them what to do. They like to view them as perfect.

Also, it is emotionally challenging to empathize with someone, it takes up emotional energy. There is the question, 'Is this person deserving of my empathy or help?', which is often not judged rationally, but by what we feel more comfortable with.

I honestly think many people have their own emotional issues and limits, which make them behave in that way. This is not an isolated issue, people often chose the answer they are more comfotable with, like with racial discrimination, not believing climate change,.. I also do not judge every issue perfectly and rationally.

Still, we have the right to demand more, better treatment, since we are right on ME/CFS, and society's perception is wrong.

 

[Tammy7]

You are way ahead of me. What pathogen is it of which you speak?

I wondered the same thing so I went to members profile page where there is a listed website. From what I can gather the OP speaks of a member of the family of viruses that causes poliomyelitis. So I assume this is what she is referring to. She believes that a virus from this family causes ME. ...........and that atypical MS is the same as ME. She can correct me if I'm wrong.

 

[weyland]

The science is there: we know which pathogen causes this disease. We have a test which can retrieve samples of that pathogen in the gastric tissue of those who have it. We have a brain scan capable of showing the perfusion injury and resulting ischemia in precisely the areas which correspond to the symptoms it causes (e.g. difficulty with even small movements from damage to the central gyrus, the brain's motor control area).

Agreed, but unfortunately SPECT scans have a reputation for being unreliable in the sense that the results can supposedly change widely and rapidly over time.

Otherwise, yes, we know that enterovirus causes and perpetuates this disease. Several dozen studies show this. It is the only virus consistently recovered from the brains, muscles, and organs of ME patients. It is the only virus linked with ME epidemics.

The problem we have is that not even supposed ME researchers will acknowledge this evidence.

 

[Paw]

There is no mystery about what this disease is, about the damage it causes, or about the symptoms which result.

You're fortunate to have such a handle on your disease. Does it make disease management more predictable and consistent? I'm optimistic that one day I'll have such certainty with my own disease, but I've got a long way to go. No snark, just sharing my own status quo.

Your term, "mental symptoms," is fairly broad. I wouldn't be quick to apply it to myself, but I am sure I have a lot of additional psychological challenges, thanks to my disease. Makes me wonder: do you viral folks have the same energy-production issues that some of the rest of us deal with? I would have thought so, especially after the recent study proving that ME/CFS cells that are put into respiration states produce far less energy than control cells. The resulting over-reliance on the sympathetic nervous system, for me, causes daily social struggles (as well as solitary struggles), as I attempt to respond to people and obstacles with calm, social energy -- despite the fact that my only fuel is stress energy.

So, while the root causes of such challenges may be physiological, I can't honestly say that my sometimes brittle responses don't constitute "mental symptoms."

 

[TJ_Fitz]

As far as mental symptoms are concerned, I really can't speak to that. I had major depressive disorder before I had ME/CFS.

 

[RKB]

You are way ahead of me. What pathogen is it of which you speak?

Hi, yes, as Tammy7 and weyland responded. ME is an enteroviral infection in the same way as AIDS is an HIV infection.

Patients with a chronic illness which is not caused by that particular pathogen don't have ME. Nor do they have CFS; there is no such thing as CFS, or, as ME/CFS. Patients in that position have a different disease with a different cause which needs to be properly investigated and properly diagnosed also.

 

[Tammy7]

Hi, yes, as Tammy7 and weyland responded. ME is an enteroviral infection in the same way as AIDS is an HIV infection.

We all have different speculations as to what causes this illness. Just want to note that I don't have that same speculation that it is caused by an enterovirus. I believe it is caused by a virus from the herpes family.........mainly EBV.

 

[TJ_Fitz]

Hi, yes, as Tammy7 and weyland responded. ME is an enteroviral infection in the same way as AIDS is an HIV infection.

Patients with a chronic illness which is not caused by that particular pathogen don't have ME. Nor do they have CFS; there is no such thing as CFS, or, as ME/CFS. Patients in that position have a different disease with a different cause which needs to be properly investigated and properly diagnosed also.

You are entitled to have your own opinion on this matter, but I certainly don't agree with it. And neither, apparently, do the host of CFS specialists you've maligned.

 

[Not dead yet!]

Hi, yes, as Tammy7 and weyland responded. ME is an enteroviral infection in the same way as AIDS is an HIV infection.

Patients with a chronic illness which is not caused by that particular pathogen don't have ME. Nor do they have CFS; there is no such thing as CFS, or, as ME/CFS. Patients in that position have a different disease with a different cause which needs to be properly investigated and properly diagnosed also.

This sounds like a reversal of what you started out saying. Can you clarify? I'm honestly asking. You may be leaving out specifics that are pertinent your point.

 

[weyland]

You are entitled to have your own opinion on this matter, but I certainly don't agree with it. And neither, apparently, do the host of CFS specialists you've maligned.

@RKB's opinion is in line with a host of ME specialists which you are choosing to ignore or are unaware of, including Dr. Melvin Ramsay himself, Dr. Dowsett, Dr. Richardson, Dr. Spurr, Dr. Hyde, Dr. Mowbray, Dr. Leon-Sotomayor, Dr. Chia, and likely others.

ME is not CFS.

ME is not caused by EBV.