Hi,In australia even if your gp is well informed on cfs/me, they are restricted by the health department on amount of testing and what types. Some medications such as antivirals are not covered by PBS so have to be bought on a private prescription which increases the cost greatly. If a gp is seen to be doing too much testing they are warned to back off by the health system mostly due to cost.
With viral testing, we just cant get titres measured so just igm or igg. If u test positive igm to a virus they say oh you have a recent infection you will get over, just rest up. if you test igg to a virus then they say oh thats just an old infection, nothing to worry about, even though you may still have viral symptoms. I think there may be some politics in not giving titre levels because they would find many with high titres, meaning viral reactivation and would have to treat with appropriate antivirals, which are expensive long term compared to many other types of treatments.
Lyme and other bacterial infections are the same as the above scenario as viral infections. Long term treatment with antibiotics or treatment with stronger IV antibiotics is expensive. they just dont want to pay the money. Drs that are seem prescribing abx in a way like they are treating lyme etc are given a warning and harshly dealt with.
I think the govt realize that alot of people in australia have chronic illnesses like cfs/me and lyme and are just counting the cost of treatment, which they dont want to spend. Theres no real thought into pain and suffering. If they were really concerned about the economy etc then they would actually help pay for these treatments and do proper testing. Effective treatments would get many people functioning better and able to work, so they are self sufficient and paying taxes.
So i think many dr's just toe the line on what the health department/govt say and the other drs who do understand cfs/me are just very restricted in what they can do. Atleast here in australia a good doctor can atleast help treat you symptomatically for pain and sleep problems and help rule out other illnesses, which seems alot more then what people are getting in the UK.
I think it will probably stay like this until there is a definitive way to test one, which would include actual biomarkers such as nk function and cytokine testing and similar testing.
I agree that the gov does certainly (and seriously) need to keep a rein on health care costs due to inordinate amounts of testing, but I would say that once diagnosed by doctors with an ongoing chronic disease such as CFS then there could be some latitude given for necessary testing. CFS is something one acquires ...it does not commence through poor habits, but by bad luck mostly! Comparatively many Type 2 diabetics have acquired a disease usually through a life time of poor health behaviours yet the government bends over backwards to provide them with dietary advice, subsidised medications, free testers and associated paraphernalia and regular bloods to monitor their health. Life is not fair....I know.... But sometimes the logic is just beyond the pale.
I would also add that the doctor has not canvassed either antibiotics or antivirals .... Even with the concept of us paying out of pocket, which we would seriously consider IF he thought it a very good chance of helping. My daughter tested positive for CMV and I know (though not tested) she will have hhv6 due to a bout of Roseola as a child. The doctor has not ever followed this path. But I suppose he knows better than me!