Hello!
Foggy is snoring softly in Foggy HQ this morning, I’m letting him have a bit of a lie-in. He’s fidgeting so I know he’s dreaming about squirrel chasing! I’m making the most of the peace and quiet by writing this blog.
As you know, I am in the process of setting up an online training organisation about M.E./C.F.S. If you are an avid follower, you will also know that I detest the term C.F.S. Whether it is the same as M.E. is neither here nor there where my hatred of the name is concerned. How can an illness with many symptoms be summed up by just one of them?
As I explained on Foggy’s new website, I am going to treat M.E. and C.F.S. as the same illness until someone in a white lab coat definitively says they are two separate conditions. Charities worldwide are calling it M.E./C.F.S. and I am taking their lead. At this moment in time, I’m concentrating on educating people about the human experience of the condition. I don’t need to confuse people with arguments about the name. I want to bring about progress in terms of how we are supported in our daily lives; we won’t get that if we don’t start educating the professionals who have a duty of care over us.
From day one, I have made it clear that 12 years ago I was diagnosed with C.F.S. by a locum GP. He said the words ‘I think you have Chronic Fatigue Syndrome. Think yourself lucky you don’t have M.E. ….that’s so much worse’. Over time, I came to see that I meet the criteria for M.E and so began to say that I have M.E. My GPs now also agree that I have M.E. To be honest, as many doctors don’t know enough/anything about M.E./C.F.S. it’s hard to know whether they are right to agree with me!
I am doing a lot of reading (as much as my M.E. allows) to make sure that the health info mentioned on stripylightbulb.com is correct. However, our knowledge base changes so blooming frequently it’s proving to be a tricky task! Thank goodness my business will have a narrative approach devoid of medical jargon! I chose to do it that way because, whatever is being argued about, whatever declarations are made from various places around the globe, the human experience of the condition doesn’t change.
I saw something on Instagram recently (the info on it dates back to 2011) ; it was an image that showed Post-Exertion Malaise (PEM) is a CFS symptom and Post-Exertion Neuroimmune Exhaustion (PENE) is the M.E. symptom. News to me! From day one of Foggy, I’ve said that M.E./C.F.S. peeps call P.E.M. ‘payback’. Reading the text below, I can categorically state that I have P.E.N.E. The definition clearly describes what I experience when I go through what I had previously been calling Post-Exertion Malaise (I thought that P.E.M. had all of the things listed under P.E.N.E.). I have never been corrected by any other M.E./C.F.S. patient.
| Taken from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3427890/
A. Postexertional neuroimmune exhaustion (PENE pen’-e): Compulsory |
| This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows: |
| 1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse. |
| 2. Postexertional symptom exacerbation: e.g.acute flu-like symptoms, pain and worsening of other symptoms. |
| 3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days. |
| 4. Recovery period is prolonged, usually taking 24h or longer. A relapse can last days, weeks or longer. |
| 5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level. |
Is this another example of another classification that we don’t need? If you could let me know I would be very grateful! As there is still confusion as to the relationship between M.E. and C.F.S. how can we say that one condition has one type of ‘payback’ and the other has something different?
What worries me, yes it genuinely worries me, is that if I can’t make head nor tail of developments how can I expect the wider general public to engage with such a complicated and difficult to understand condition? I know it is going to be a very hard, uphill struggle and I am more than up for the challenge, but I do feel these almost daily definition changes are not helpful.
Love,
Sally
(and Foggy OBVIOUSLY)
xxx