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Good to see this paper that confirms the possible cause for the chronic hypovolemia. I have had a significant improvement in my quality of life from getting weekly IV fluids. I am in the US and insurance covers this because of my diagnosis of ME with hypovolemia. I was grateful to see these...

Her information is based on Dr. Hyde's work. More researchers are coming around to this hypothesis. See Maureen Hanson's work. Also Dr. Chia's research. Again, this is likely a subset of patients and Dr. Hyde was clear about that.

I disagree with this assessment of the MEAI. Their information is based on the ICC. The ICC and the IC Primer was created by experts in the field. My opinion is that their information is accurate for a subset of patients who fulfill this criteria. I think we can all have a place in this...

I am aware we are of different minds about what "ME/CFS" is and your opinion about the ICC. In my personal experience I fulfill the ICC and know people who don't and have an ME/CFS - IOM diagnosis. Having talked to many of these ME/CFS (and CFS- Fukuda patients), it is clear to me that I am...

In my opinion, this is a valid question. For those who may not know ME/CFS has multiple meanings. What it means to someone depends on where someone lives or their knowledge of our community's history. ME/CFS = ME and CFS ME/CFS = Canadian Consensus Criteria (a lot of studies with the ME/CFS...

Sorry - just saw this. Not sure what more info people are looking for. My article explains the way back machine. I don't have a link to the new website, but the public Facebook group, Nighitngale Continuum is very active. https://www.facebook.com/share/g/1796BNYEMm/

My EP cardiologist diagnosed it by symptoms and physical presentation. POTS symptoms with no sign of pooling in my legs/feet. I'm not sure what else he based it on. He came across as very well versed on my diagnosis (ME) as well as knowledgeable about Ivabradine and how it helps people in my...

I have been on Ivabradine since 2014. It doesn't affect most of my symptoms but it does lower my heart rate. My EP Cardiologist was clear to explain that the purpose was to slow down my heart so it would fill up better - thus helping the health of my heart. He understood I have low blood...

So sorry for what you are both going through. None of this is easy! I have a lot of experience with mast cell activation syndrome - dysfunctional immune system since the 90s. I can relate to having to limit foods to manage symptoms. I have also had trouble with steroids. If you are...

Thanks SNT Gatchaman! Greatly appreciated!

Can you look to see if the patient selection used the Canadian Consensus Criteria? It's usually listed under the methods section. Thanks in advance!

To clarify - you are saying all the researchers who are using the ICC to select patients are not using a scientific approach? If that is the case, I strongly disagree. We are seeing the importance of stratifying patients using the ICC. See the list of researchers here: See the...

Were you able to find where it states that this condition has PEM? I'm not finding it other than in the list saying this condition has that symptom. What's weird is that it doesn't include ME/CFS as a condition with this feature...

I have been looking into this topic for a while. The more I look, the more I find post-exertional malaise discussed in other conditions (and in healthy controls). I started a list here. I see there are more references in this thread so it needs to be updated. Note the Beyond ME/CFS IOM...

Jeannette is doing 2 more articles on this topic. I don't think she has (yet) mentioned about submitting.

While this is a very complex article covering the data, this quote sums it up nicely: "It is easy to see why the authors chose not to generate a visual of what actually happened during the EEfRT and instead resorted to manipulating the data with statistical tools until they arrived at a figure...

I looked into various ways Drs might utilize the PEM code that would interfere with getting an ME (ME/CFS & CFS) diagnosis of G93.32 when I originally looked into this proposal. I created this chart. See article here...

This is a complicated topic and the function of the ICD codes in the U.S. is not currently working effectively. What the government does and what actually happens in the free market health care system are two different things. Planning appropriately means taking the issue of what is happening...

I found this study interesting and wrote about it in my recent news article (Substack) Here is what I wrote: Research into Muscle Dysfunction Consequences of Sarcolemma Fatigue on Maximal Muscle Strength Production in Patients with ME/CFS was published Aug 3, 2023 and discusses muscle...

I concur with this proposal being very problematic. I have reached out via their webform about my concerns about the "one name" proposal. I received a reply thanking me for my input and Chesley seemed open to further discussion. The response has some personal information in it, so I am...